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

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The mass hysteria over food allergies is just insane. I say this as a mom whose child has a peanut/tree nut allergy. I was hysterical for the first year thinking my kid could die at any moment. Then I really looked at the number of deaths due to food allergies and it is minuscule. The numbers of deaths you find on food allergy websites aren't accurate. More people are dying from insect stings and lightening strikes.
I refuse to believe the 2 year old is so sensitive to gluten that you can't prepare food in the same kitchen if you use paper plates and some Clorox wipes to clean up crumbs. There is no way he could ever go to preschool, the park, a zoo, etc.

Celiac isn't an allergy.

If a person has celiac, they can't process gluten, which is a type of protein found in wheat products. It damages the lining of their intestines causing malabsorption, malnutrition, muscle aches and joint pain, exhaustion, failure to thrive in kids, painful gut cramping, gas, bloating and diarrhea/constipation. Some people with celiac can take a little bit of cross-contamination without too much trouble. Many people with celiac get terrible symptoms from even a minute gluten exposure.

Why would you advocate doing that to a two year old?

Post a link to a peer reviewed medical journal that indicates minute exposure to gluten causes terrible symptoms. If that were the case, a child would have to live in a bubble and never attend school, go to a park or visit a store. There are crumbs and flour dust all over. It is reasonable not to eat bread products in the presence of the 2 year old so he doesn't feel excluded but to not allow a crumb to touch a kitchen counter when the 2 year old is napping is ridiculous.

Celiac Disease Foundation summarizes the research on their website.

[Anonymous]

I wasn't able to get a direct answer from the Celiac Disease Foundation website, but there is indication that a small amount ofcross-contamination each day is safe (and this is one reason why less than 20 ppm as the US labelling standard is safe for considering "gluten-free"):

According to the Center’s website, “research from the Center has shown that 10 milligrams per day of gluten consumption is a safe level for the vast majority of individuals with celiac disease.” The Center’s website goes on to state that 10 milligrams is roughly the equivalent of one-eighth of a teaspoon of flour, or 18 slices of bread with each slice containing 20 ppm of gluten.
Read more at https://celiac.org/celiac-disease/resources/fast-facts-fda-gluten-free-labeling-rule/#d3W1JixfyChsWsrK.99

There is also indication that people with celiac disease have differing levels of sensitivity:

Be assertive: depending on your sensitivity, you may want to let your server or host know how severe your reaction can be. Letting them know will help alleviate some of your stress.
Read more at https://celiac.org/live-gluten-free/gluten-free-lifestyle/tips-and-tricks/#v3REpH04GeuiyWPP.99

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, this is not what you want to hear but here goes. Why are you allowing your 4 year old to have such a limited diet? Kids learn from their homes. Forget the gluten issue. Fill you home with a variety of good food, and keep presenting it. Your kids will eat more than chicken nuggets soon enough. Unless they have a rare disorder, your children will not starve themselves if you give them different foods on a consistent basis. It would also help if you and your DH ate differently, and served everyone one meal. Don't serve kid meals. Unless, god forbid, you are also eating chicken nuggets. You do realize that the nutritional value of food out of a package is not very high, right?

OP here - people parent differently and I totally disagree with you. My older one used to be like his little brother but little by little he has gotten more open minded and we are encouraging him without forcing him. I believe my LO will too over time, so this is just a battle I choose not to fight at this age, esp. While on 'vacation' when other stressors are present.

You realize the diet your child eats before he (or she) is 5 is the diet that will set them up for life. Most likely - you will a child with life long eating disorders and probably obesity. Be a parent - not a friend.

What? I was the pickiest eater imaginable as a child and pretty much hated everything (and my parents were like a lot of the posters and wouldn't give in, so I learned creative ways of disposing of food). I was the child who'd rather get sick from hunger than eat what I did not want. Now I love everything, including plain brussel sprouts and turnips. I grew out of my pickiness naturally. Or look at it this way - how many organic-everything, healthy eating posters on these boards were fed the typical diet of lunchables and kool aid by their parents in the 1970s?

As to the original topic, this vacation sounds like a trip from hell. People may dispute all they want whether OP should have picky children, but she does at the moment and they won't drastically change in a few weeks. It's one thing to visit a very restricted house where you can go out to eat if it gets too onerous, but stuck in the middle of nowhere with cranky children and a bunch of in-laws? That's punishment, not a vacation.

Oh look, an anecdote. That must negate data.

LOL. Ok. Please share your "data" that shows that if you are a picky eater at four you are doomed to eating disorders and obesity.

[Anonymous]

Anonymous wrote:I wasn't able to get a direct answer from the Celiac Disease Foundation website, but there is indication that a small amount ofcross-contamination each day is safe (and this is one reason why less than 20 ppm as the US labelling standard is safe for considering "gluten-free"):

According to the Center’s website, “research from the Center has shown that 10 milligrams per day of gluten consumption is a safe level for the vast majority of individuals with celiac disease.” The Center’s website goes on to state that 10 milligrams is roughly the equivalent of one-eighth of a teaspoon of flour, or 18 slices of bread with each slice containing 20 ppm of gluten.
Read more at https://celiac.org/celiac-disease/resources/fast-facts-fda-gluten-free-labeling-rule/#d3W1JixfyChsWsrK.99

There is also indication that people with celiac disease have differing levels of sensitivity:

Be assertive: depending on your sensitivity, you may want to let your server or host know how severe your reaction can be. Letting them know will help alleviate some of your stress.
Read more at https://celiac.org/live-gluten-free/gluten-free-lifestyle/tips-and-tricks/#v3REpH04GeuiyWPP.99

If this child is that sensitive and the diagnosis is recent and they have a newborn, the child is too sick to be visiting a remote cabin with other children. This child needs to stay near the hospital. Think of the guilt that OP will be subjected to if her kid puts a grain of food near this severely compromised child. It is just not the right setting.

[Anonymous]

Anonymous wrote:
If this child is that sensitive and the diagnosis is recent and they have a newborn, the child is too sick to be visiting a remote cabin with other children. This child needs to stay near the hospital. Think of the guilt that OP will be subjected to if her kid puts a grain of food near this severely compromised child. It is just not the right setting.

That's it, really. This isn't really about the food, and no lists of options will help the real issue. Neither will commentary that OP is inadequate if she and her kids can't deal with just changing food for five days, even with the picky eating issue aside.

It's the drama. No, that's understandable and appropriate drama, but it is drama (heightened emotions, high stakes, limited choice, no real flexibility, potential for bad outcomes, heavily invested parties (for understandable reasons), and a newborn baby and just postpartum mom, for chrissake). If this vacation were within a half hour drive of some simple small town restaurants and a grocery, I think it would be perfectly do-able. If the OP could potentially stay at a nearby hotel or two if people needed a break, it would be do-able. If there wasn't a newborn baby necessitating the cabin assignment -- bless its heart and glad it is in the woeld with us -- I think it would be do-able. If the parents and grandmother had dealt with celiac disease before and had a level of assuredness about it, it would be do-able.

As it is, it is technically do-able, but it's a powderkeg, and that's nobody's fault. It just is what it is. One loving response is to change things and have the same warm experiences, just spread out over a longer timeframe with fewer pressures.

There is nothing magical about those five days in that remote place. Other families don't have a summer cabin, and they still love each other and support each other. I can almost guarantee you that if this were my life, trying to force that powderkeg to be a perfect magical moment would lead to more strain in the long run over family relationships. Just not the outcome I'd want. Might work differently for others, but I can see that in my family, the kind, loving, involved, and gentle thing would be to visit a little later and with a little more flexible circumstances.

Ha! And that's not because we can't figure out how to sub out a corn tortilla.

[Anonymous]

PS to above: I don't mean the newborn's family shouldn't visit the grandma. I think that's awesome, and I leave it up to them to make it work. I just think adding more kids into that particular mix may not be the only loving family option. There might be options just as family-oriented, and I would not criticize OP for considering them, if she did.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I wasn't able to get a direct answer from the Celiac Disease Foundation website, but there is indication that a small amount ofcross-contamination each day is safe (and this is one reason why less than 20 ppm as the US labelling standard is safe for considering "gluten-free"):

According to the Center’s website, “research from the Center has shown that 10 milligrams per day of gluten consumption is a safe level for the vast majority of individuals with celiac disease.” The Center’s website goes on to state that 10 milligrams is roughly the equivalent of one-eighth of a teaspoon of flour, or 18 slices of bread with each slice containing 20 ppm of gluten.
Read more at https://celiac.org/celiac-disease/resources/fast-facts-fda-gluten-free-labeling-rule/#d3W1JixfyChsWsrK.99

There is also indication that people with celiac disease have differing levels of sensitivity:

Be assertive: depending on your sensitivity, you may want to let your server or host know how severe your reaction can be. Letting them know will help alleviate some of your stress.
Read more at https://celiac.org/live-gluten-free/gluten-free-lifestyle/tips-and-tricks/#v3REpH04GeuiyWPP.99

If this child is that sensitive and the diagnosis is recent and they have a newborn, the child is too sick to be visiting a remote cabin with other children. This child needs to stay near the hospital. Think of the guilt that OP will be subjected to if her kid puts a grain of food near this severely compromised child. It is just not the right setting.

You don't understand how celiac works.

A celiac reaction isn't something that requires you to be suddenly rushed to a hospital. Gluten can cause short term discomfort, but not hospital level discomfort, but the issue is that it causes long term damage to the vilii in the intestines, which can lead to compromised nutritional status and developmental issues, as well as susceptibility to conditions such as diabetes.

We know very little about OP's nephew's disease status, but it seems likely that the "safe" amount of gluten is less for a smaller body.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I wasn't able to get a direct answer from the Celiac Disease Foundation website, but there is indication that a small amount ofcross-contamination each day is safe (and this is one reason why less than 20 ppm as the US labelling standard is safe for considering "gluten-free"):

According to the Center’s website, “research from the Center has shown that 10 milligrams per day of gluten consumption is a safe level for the vast majority of individuals with celiac disease.” The Center’s website goes on to state that 10 milligrams is roughly the equivalent of one-eighth of a teaspoon of flour, or 18 slices of bread with each slice containing 20 ppm of gluten.
Read more at https://celiac.org/celiac-disease/resources/fast-facts-fda-gluten-free-labeling-rule/#d3W1JixfyChsWsrK.99

There is also indication that people with celiac disease have differing levels of sensitivity:

Be assertive: depending on your sensitivity, you may want to let your server or host know how severe your reaction can be. Letting them know will help alleviate some of your stress.
Read more at https://celiac.org/live-gluten-free/gluten-free-lifestyle/tips-and-tricks/#v3REpH04GeuiyWPP.99

If this child is that sensitive and the diagnosis is recent and they have a newborn, the child is too sick to be visiting a remote cabin with other children. This child needs to stay near the hospital. Think of the guilt that OP will be subjected to if her kid puts a grain of food near this severely compromised child. It is just not the right setting.

You don't understand how celiac works.

A celiac reaction isn't something that requires you to be suddenly rushed to a hospital. Gluten can cause short term discomfort, but not hospital level discomfort, but the issue is that it causes long term damage to the vilii in the intestines, which can lead to compromised nutritional status and developmental issues, as well as susceptibility to conditions such as diabetes.

We know very little about OP's nephew's disease status, but it seems likely that the "safe" amount of gluten is less for a smaller body.

But I DO know how PEOPLE work and this is a powder keg.

[Anonymous]

Anonymous wrote:

Anonymous wrote:
If this child is that sensitive and the diagnosis is recent and they have a newborn, the child is too sick to be visiting a remote cabin with other children. This child needs to stay near the hospital. Think of the guilt that OP will be subjected to if her kid puts a grain of food near this severely compromised child. It is just not the right setting.

That's it, really. This isn't really about the food, and no lists of options will help the real issue. Neither will commentary that OP is inadequate if she and her kids can't deal with just changing food for five days, even with the picky eating issue aside.

It's the drama. No, that's understandable and appropriate drama, but it is drama (heightened emotions, high stakes, limited choice, no real flexibility, potential for bad outcomes, heavily invested parties (for understandable reasons), and a newborn baby and just postpartum mom, for chrissake). If this vacation were within a half hour drive of some simple small town restaurants and a grocery, I think it would be perfectly do-able. If the OP could potentially stay at a nearby hotel or two if people needed a break, it would be do-able. If there wasn't a newborn baby necessitating the cabin assignment -- bless its heart and glad it is in the woeld with us -- I think it would be do-able. If the parents and grandmother had dealt with celiac disease before and had a level of assuredness about it, it would be do-able.

As it is, it is technically do-able, but it's a powderkeg, and that's nobody's fault. It just is what it is. One loving response is to change things and have the same warm experiences, just spread out over a longer timeframe with fewer pressures.

There is nothing magical about those five days in that remote place. Other families don't have a summer cabin, and they still love each other and support each other. I can almost guarantee you that if this were my life, trying to force that powderkeg to be a perfect magical moment would lead to more strain in the long run over family relationships. Just not the outcome I'd want. Might work differently for others, but I can see that in my family, the kind, loving, involved, and gentle thing would be to visit a little later and with a little more flexible circumstances.

Ha! And that's not because we can't figure out how to sub out a corn tortilla.

Very well said. People can keep bickering over the details of celiac, but that really misses the point. This is about a unique set of circumstances at this moment in time for these familes, and the best way for them to get through this gracefully.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I wasn't able to get a direct answer from the Celiac Disease Foundation website, but there is indication that a small amount ofcross-contamination each day is safe (and this is one reason why less than 20 ppm as the US labelling standard is safe for considering "gluten-free"):

According to the Center’s website, “research from the Center has shown that 10 milligrams per day of gluten consumption is a safe level for the vast majority of individuals with celiac disease.” The Center’s website goes on to state that 10 milligrams is roughly the equivalent of one-eighth of a teaspoon of flour, or 18 slices of bread with each slice containing 20 ppm of gluten.
Read more at https://celiac.org/celiac-disease/resources/fast-facts-fda-gluten-free-labeling-rule/#d3W1JixfyChsWsrK.99

There is also indication that people with celiac disease have differing levels of sensitivity:

Be assertive: depending on your sensitivity, you may want to let your server or host know how severe your reaction can be. Letting them know will help alleviate some of your stress.
Read more at https://celiac.org/live-gluten-free/gluten-free-lifestyle/tips-and-tricks/#v3REpH04GeuiyWPP.99

If this child is that sensitive and the diagnosis is recent and they have a newborn, the child is too sick to be visiting a remote cabin with other children. This child needs to stay near the hospital. Think of the guilt that OP will be subjected to if her kid puts a grain of food near this severely compromised child. It is just not the right setting.

You don't understand how celiac works.

A celiac reaction isn't something that requires you to be suddenly rushed to a hospital. Gluten can cause short term discomfort, but not hospital level discomfort, but the issue is that it causes long term damage to the vilii in the intestines, which can lead to compromised nutritional status and developmental issues, as well as susceptibility to conditions such as diabetes.

We know very little about OP's nephew's disease status, but it seems likely that the "safe" amount of gluten is less for a smaller body.

But I DO know how PEOPLE work and this is a powder keg.

A powder keg that's easily avoidable by limiting the gluten to a room where the child has no access.

[Anonymous]

My entire family eats GF foods. There are lots that are fine. They are indistinguishable from wheat-based foods: breads, pasta, cookies, cakes, etc.

Ok, I need to maintain a GF diet due to a medical condition, and I understand that you need your family to be compassionate and understanding, but having eaten many GF foods after years of eating regular foods, this is simply not true. People need to be compassionate and understanding and eat the food anyway, but it is not indistinguishable from wheat-based food in most cases.

[Anonymous]

They have already shown that they are paranoid about 'particles in the air" Thats going to be very difficult to overcome with young children. Also they have the cabin, so thee is literally no place to go to keep away from these fears.

[Anonymous]

Anonymous wrote:You sound like my SIL, OP. My children have multiple allergies, including gluten and dairy. My SIL showed up at every single family gathering with a food that my child could not eat. She'd always say, "Oh, Larla can't eat the BUTTER on the green beans?" Everyone else respected my DC's allergies and brought food she could eat. But my SIL always wanted her kids "favorites."

My child could die if she eats certain foods. Everyone in the family understands and respects this, except for SIL., who found it a total PITA to bring an allergen-free food to a family holiday celebration.

My entire family eats GF foods. There are lots that are fine. They are indistinguishable from wheat-based foods: breads, pasta, cookies, cakes, etc.

As a PP said, it's really difficult to feed a child with multiple allergies. Be grateful you only have to feed your children GF foods for a few days. You have it easy, OP. Gratitude is the key to happiness.

deep sigh....eyes rolling

[Anonymous]

Anonymous wrote:They have already shown that they are paranoid about 'particles in the air" Thats going to be very difficult to overcome with young children. Also they have the cabin, so thee is literally no place to go to keep away from these fears.

Where have they shown that? The OP has not made any mention of "particles in the air", and the only people I've seen who have brought it up are people who mention that gluten isn't airborne in that way.

[Anonymous]

OP, have you considered that if grandma cleaned her kitchen so well to ensure that it is gluten free, that perhaps she is planning on preparing lots of GF meals that the whole family can enjoy. You aren't going to have either kitchen at your disposal, so you need to plan to make your bedrooms the location for keeping and preparing foods. Ask grandma if the microwave can be moved into your room. A tiny fridge can be bought at that Super Target you mentioned for next to nothing. And if that's too extravagant, then a cooler that that you keep iced. I would definitely be annoyed that the other family hasn't taken a moment to consider the needs and desires of the other people who will be on this vacation too, but your best bet is to suck it up as much as possible.

Touchy question...OP, do you think you might be bothered because grandma is bending over backwards to accommodate the other grandchildren (GF kitchen for one kid, awarding seperate cabin because of the infant one, etc.) and you're feeling like your old-news grandkids aren't rating as highly on the grandma caring scale? I might feels tinges of this, if I were in your shoes...