Is there a such thing as too careful?

[UncleB]

My sister, 5' 1" and maybe 100lbs., and her husband, 5' 5" and maybe 125lbs, have a seven-year-old daughter, my darling niece, who is quite small for her age, in the bottom percentile for her age in height and weight, actually. Looking for a possible cause beyond simple genetics, i.e., that both her parents are very small people, her pediatrician conducted wide-range testing for many, many things to see if her growth might be being stunted by some medical condition. In his testing, she might be stunting her growth. She tested positive for celiac disease. Naturally, they then had themselves and their five-year-old son, my darling nephew, who is likewise in the bottom percentile for his age in height and weight (so small he still looks like a toddler, so small that his teacher called them in because the other kids in class see him as much younger and so baby him, constantly offering help on tasks he's supposed to learning from, which he, being as cute, kindhearted, sweet and smiley as the day is long, always graciously accepts). They, including my darling nephew, all tested negative, meaning he's just as small for his age without having celiac, so it can't be said my niece's smallness is due to celiac, but her diagnosis, regardless of how it came about, nevertheless remains.

Because of how difficult it is to have only a partially gluten-free household and because my sister and her husband are very inclusive and don't want my niece to ever feel the isolation and lonlinesss of being disincluded or left out of anything, like not being able to eat what the rest of the family is eating, they've all gone completely gluten-free. Remembering being a kid, I totally get that. Kids can be super sensitive and I could see myself as a kid being made to feel wierd or defective or unincluded if, for example, everyone else was having cake and I couldn't but had to have something else. While with some diseases that would be rather unavoidable, with celiac, by them all going gluten-free, it's quit avoidable, so I'm happy they made that choice, happy for her, because I genuinely believe it'll make her happier, happier in generally, happier now and in the long run for not having her self-esteem chipped away at or slowly eroded away by time after time after time of not being able to partake in what everyone else does, by repeatedly and frequently being excluded and so feeling excluded. I support that to such extent that whenever my niece comes here, my household goes completely gluten-free, which I've done by always consulting my sister on everything I'll make and serve and by also consulting the Internet and sites like this.

Here's where I'm wondering if there's such a thing as too careful, though--

* My niece, being thin and small, gets cold easily and has this doll filled with rice that her mom puts in the microwave to get hot and she uses it to warm up her cold hands and feet or to take to bed with her to warm up the bed. While she was here, I put it in the microwave for her. When I gave it to her, she found a couple of crumbs on it that had touched her skin, probably from something one of my kids had cooked in the microwave. Not knowing what the crumbs even were, my sister threw out her doll (since you can't throw a doll filled with rice in the washing machine as the rice would expand so much it'd explode the doll), said she'd get her a new one, and washed her arm thoroughly with soap and water. My sister wasn't angry or mean about it at all, but because of how dirty the doll was and how it's impossible to wash a doll filled with rice, it was obvious she'd had the doll quite some time, my own memories of it going back a couple of years, my niece was quite upset, crying in ragged sobs about her doll being thrown away.

* Every time I go to serve anything I've cooked in a pan to my niece, my sister asks me what pan I've cooked it in first, and I have to reassure her before she'll let my niece have it that I did, in fact, cook it in one of the pans I've bought just for cooking only gluten-free foods in, because my other pans that I clean thoroughly with soap and water have had gluten touch them in the past.

These are but two examples of many. Keep in mind that this is a girl who has been happily eating gluten her entire life until about a year ago when she was diagnosed by happenstance during wide-range testing looking for possible causes of her being small for her age, albeit no smaller than her little brother is for his age or his parents are and ever were for their ages, a girl who has never been sick or sickly, a girl whose health and growth over the past year has remained utterly consistent with before she went gluten-free, which isn't to say that celiac isn't real or that going gluten-free wasn't merited because of it is and it was. It's just hard for me to reconcile the extreme measures, like throwing her doll away or my having to get new pans just for her wasn't overkill when it's so highly doubtful there was any gluten on either that doll or my other pans, and, on the off chance there was, it would've only been the extremely trace amounts, infinitesimal, especially in relation to all the gluten she was eating just a year ago all the time in bread and cereal and just, well, everything, without dying or becoming sick or even having any observable adverse reaction, which even if not observed at the time because of ignorance or writing it off as just her nature would've become clear and observable after she gave up gluten as any adverse reactions abated and her health and well-being suddenly improved from a lacking that nobody realized because that's how she'd always been, which hasn't happened as she has remained exactly consistent with how she was before. So with all this in mind, is there such a thing as too careful? Like is throwing her doll away or requiring special pans to avoid even the most trace amounts of gluten from even just touching her skin overkill for a girl with celiac that's proven unsevere enough that she's eaten gluten regularly and unregulated her whole life symptom-free with her health and whose health and well-being has remained consistent since she went gluten-free because of the happenstance diagnosis a year ago with what it was before when her exposure to gluten occurred regularly and unregulated? Again, I'm not suggesting she go back on gluten, because she does have celiac, but just asking: isn't it overkill in such a case that, unlike so many other cases that are quite severe, has proven to be so lacking in severity as to have always been asymptomatic to throw a doll away because maybe gluten touched it or not allow food to be served to her because at some point in that pan that food was cooked in's history gluten touched it?

[trents]

Welcome to the forum, UncleBen!

It does sound like your sister is overreacting to some extent. We do have people on this forum who claim that any physical contact with gluten causes them a reaction but I think that is not common.

But one thing you need to be aware of is that once people go gluten free and have been gluten free for a significant time like your niece, they lose any tolerance to gluten they might have had previously. This means that whereas before they seemed not to have an external reaction to gluten exposure, or mild one, they now may get very ill, even when small amounts of gluten are ingested. I can personally attest to this phenomenon. 

The other thing to realize is that symptoms are not always a reliable indicator of damage being done to body systems by gluten to those with celiac disease. Many celiacs have very mild symptoms or even none but when they for some reason get tested for antibodies they are positive and when an endoscopy/biopsy done there is damage to the small bowel lining. We call them "silent" celiacs. Typically, they do develop more symptoms over time as the damage to the villi of the small bowel progresses if the disease goes unheeded.

One large study done by the Mayo Clinic recently, involving over 300 people, found that 44% of first degree relatives of those with celiac disease also had celiac disease, many of them were totally unaware of it I'm sure because they were largely asymptomatic. Now to be fair, other familial studies of celiac disease have yielded figures more like 10% of first degree relatives had celiac disease.

Edited July 4, 2022 by trents

[Scott Adams]

Welcome to the forum.

It is definitely possible that your niece and her parents are overreacting, but I think it's important for you to try to be supportive even if that is the case. There are many examples here of totally non-supportive family members who simply dismiss such things as "crazy" or "ridiculous," and we usually see this ending badly, as it usually creates a split in families. 

You may be interested in a set of articles written by Jean Duane, a PhD, who has written extensively on the topic of sociology and celiac disease:

 

[knitty kitty]

@UncleBen,

@trents is on the right track.  Some people are highly sensitive to the least amount of gluten contamination on the inside.  Not so much on the outside (on the skin).  

Throwing away the doll was probably a bit over the top.  If you feel so badly for its loss, ask a local quilters group or a sewist on Etsy to recreate one for your niece.  What a wonderful gift from a kind, caring and concerned uncle that would be!

Remind your niece's mom that having her daughter checked for vitamin and mineral deficiencies is part of proper follow up care for Celiac patients.  Your niece's cold hands and feet could be due to iron deficiency and possibly anemia.  Adequate Vitamin D,  calcium, and the eight B vitamins are required to grow those long bones!

Hope this helps!

[RMJ]

I can see how crumbs on a doll could be a worry.  I know enough to wash my hands after touching something that may have had gluten on it.  Would your niece be willing to wash her hands every time she was done playing with the doll, before she might put her fingers in her mouth? Does she ever kiss her doll?

One of my celiac antibodies didn’t return to normal levels until I got rid of one well-scrubbed stainless steel pan that didn’t have a mirror smooth surface.  Coincidence?  Maybe.  But it is the only change I know of at that time.

I think it’s great that her family is so supportive of her need to be gluten free.  I think it’s great that you bought a pan to cook in that has never seen gluten.  But I don’t think her family is over-reacting.  It is lucky that your niece was diagnosed before gluten and the autoimmune antibodies of celiac disease attacked her little body and caused major problems for her. Maybe that would be a more palatable way for you to view it, instead of comparing her outwardly visible health before and after going gluten free.

[Wheatwacked]

There is also Non Celiac Gluten Sensitivity, which shares many of the symptoms but all tests are negative. Celiac is 1% and NCGS is 10% of the poputation. The possibility that NCGS and Celiac are variations of Gluten Sensitivity is undecided. The diagnosis of NCGS is to rule out Celiac and watch for improvement on a gluten free diet then return of symptoms with gluten. My son was just weaned when it got him. I was 68 when it got me but symptons I had always had since childhood and had been told were normal suddenly cleared with GFD. He looked like a Biafran Famine Baby and 43 years later so did I (but bigger).

[ButWhatCanIEat]

On 7/4/2022 at 8:01 AM, UncleB said:

My sister, 5' 1" and maybe 100lbs., and her husband, 5' 5" and maybe 125lbs, have a seven-year-old daughter, my darling niece, who is quite small for her age, in the bottom percentile for her age in height and weight, actually. Looking for a possible cause beyond simple genetics, i.e., that both her parents are very small people, her pediatrician conducted wide-range testing for many, many things to see if her growth might be being stunted by some medical condition. In his testing, she might be stunting her growth. She tested positive for celiac disease. Naturally, they then had themselves and their five-year-old son, my darling nephew, who is likewise in the bottom percentile for his age in height and weight (so small he still looks like a toddler, so small that his teacher called them in because the other kids in class see him as much younger and so baby him, constantly offering help on tasks he's supposed to learning from, which he, being as cute, kindhearted, sweet and smiley as the day is long, always graciously accepts). They, including my darling nephew, all tested negative, meaning he's just as small for his age without having celiac, so it can't be said my niece's smallness is due to celiac, but her diagnosis, regardless of how it came about, nevertheless remains.

Because of how difficult it is to have only a partially gluten-free household and because my sister and her husband are very inclusive and don't want my niece to ever feel the isolation and lonlinesss of being disincluded or left out of anything, like not being able to eat what the rest of the family is eating, they've all gone completely gluten-free. Remembering being a kid, I totally get that. Kids can be super sensitive and I could see myself as a kid being made to feel wierd or defective or unincluded if, for example, everyone else was having cake and I couldn't but had to have something else. While with some diseases that would be rather unavoidable, with celiac, by them all going gluten-free, it's quit avoidable, so I'm happy they made that choice, happy for her, because I genuinely believe it'll make her happier, happier in generally, happier now and in the long run for not having her self-esteem chipped away at or slowly eroded away by time after time after time of not being able to partake in what everyone else does, by repeatedly and frequently being excluded and so feeling excluded. I support that to such extent that whenever my niece comes here, my household goes completely gluten-free, which I've done by always consulting my sister on everything I'll make and serve and by also consulting the Internet and sites like this.

Here's where I'm wondering if there's such a thing as too careful, though--

* My niece, being thin and small, gets cold easily and has this doll filled with rice that her mom puts in the microwave to get hot and she uses it to warm up her cold hands and feet or to take to bed with her to warm up the bed. While she was here, I put it in the microwave for her. When I gave it to her, she found a couple of crumbs on it that had touched her skin, probably from something one of my kids had cooked in the microwave. Not knowing what the crumbs even were, my sister threw out her doll (since you can't throw a doll filled with rice in the washing machine as the rice would expand so much it'd explode the doll), said she'd get her a new one, and washed her arm thoroughly with soap and water. My sister wasn't angry or mean about it at all, but because of how dirty the doll was and how it's impossible to wash a doll filled with rice, it was obvious she'd had the doll quite some time, my own memories of it going back a couple of years, my niece was quite upset, crying in ragged sobs about her doll being thrown away.

* Every time I go to serve anything I've cooked in a pan to my niece, my sister asks me what pan I've cooked it in first, and I have to reassure her before she'll let my niece have it that I did, in fact, cook it in one of the pans I've bought just for cooking only gluten-free foods in, because my other pans that I clean thoroughly with soap and water have had gluten touch them in the past.

These are but two examples of many. Keep in mind that this is a girl who has been happily eating gluten her entire life until about a year ago when she was diagnosed by happenstance during wide-range testing looking for possible causes of her being small for her age, albeit no smaller than her little brother is for his age or his parents are and ever were for their ages, a girl who has never been sick or sickly, a girl whose health and growth over the past year has remained utterly consistent with before she went gluten-free, which isn't to say that celiac isn't real or that going gluten-free wasn't merited because of it is and it was. It's just hard for me to reconcile the extreme measures, like throwing her doll away or my having to get new pans just for her wasn't overkill when it's so highly doubtful there was any gluten on either that doll or my other pans, and, on the off chance there was, it would've only been the extremely trace amounts, infinitesimal, especially in relation to all the gluten she was eating just a year ago all the time in bread and cereal and just, well, everything, without dying or becoming sick or even having any observable adverse reaction, which even if not observed at the time because of ignorance or writing it off as just her nature would've become clear and observable after she gave up gluten as any adverse reactions abated and her health and well-being suddenly improved from a lacking that nobody realized because that's how she'd always been, which hasn't happened as she has remained exactly consistent with how she was before. So with all this in mind, is there such a thing as too careful? Like is throwing her doll away or requiring special pans to avoid even the most trace amounts of gluten from even just touching her skin overkill for a girl with celiac that's proven unsevere enough that she's eaten gluten regularly and unregulated her whole life symptom-free with her health and whose health and well-being has remained consistent since she went gluten-free because of the happenstance diagnosis a year ago with what it was before when her exposure to gluten occurred regularly and unregulated? Again, I'm not suggesting she go back on gluten, because she does have celiac, but just asking: isn't it overkill in such a case that, unlike so many other cases that are quite severe, has proven to be so lacking in severity as to have always been asymptomatic to throw a doll away because maybe gluten touched it or not allow food to be served to her because at some point in that pan that food was cooked in's history gluten touched it?

Your sister wasn't overreacting. The doll became contaminated with what is poison to her child and had to be thrown out. Yes she was "happily eating gluten" until a year ago when the doctors discovered that was stunting her growth and causing her to be malnourished. Stop second guessing your sister. She can get her another doll.