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Kids and gluten, where to draw the line?

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  • Kids and gluten, where to draw the line?

    In preparing our almost 5 year old daughter for her first school dance (a "daddy daughter dance") I paid more notice than I usually do--she's great about taking care of herself at bath time aside from needing help washing her hair, but I was a bit more attentive today. Well, I noticed a rash around her elbows, both sides, that is itching her horribly. It wasn't there a few days ago. While we are Primal (and therefore gluten free) at home, she gets treats at school because I didn't feel the need to be militant with my kids unless they showed intolerances. Considering that her class had all kinds of cupcakes and cookies for Valentine's Day both Thurs. and today, I'm now worried and re-thinking that stance.

    Of course I googled it, and her rash looks *just like* dermatitis herpetiformis seen in Celiacs. Here's the thing though, should I give her tons of gluten before taking her to the doctor so that her tests come out positive? That just seems terrible to me... At the same time, I really do want to know, because "gluten intolerance" seems to be linked to fad diets these days...

  • #2
    That is a tough one. Do you need the test to be positive though, to say no more treats at school?
    Can you bring things that you make so she can eat? Do treats happen often? It sounds likely to be that, but is it possibly something you are cleaning/washing her with? Maybe try no soap for a while? Or something environmental?
    I have said to my sons school its ok he has whatever they have on someones birthday (the only time things like this happen at school), but if he had a rash like that id have to say no more.

    Hope you can work it out soon

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    • #3
      Honestly the differential on this rash includes lots of stuff you may have to rule out. Contact dermatitis is a fairly common thing with kids too. Her history or lack thereof with symptoms can narrow the possibilities. Bad news is she will likely have to ingest gluten to challenge if you decide it necessary to test Gluten Challenge - Diagnosing Celiac After a Gluten-Free Diet .

      I have two kids. Neither have been tested, however one us absolutely gluten free based on digestive symptoms and the other just gets a pass on special occasions. Really if you fear intolerance rather than celiac just cut the stuff out and skip the test IMO.... plenty of gluten free items to make life easy these days. Heck I even allow my kids some rice chex for breakfast a few times a week.
      Last edited by Neckhammer; 02-16-2013, 08:27 PM.

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      • #4
        You have to give her gluten for a while before testing, but at that age IMO it's very important to get the testing or the school might not take you seriously (unless you can find a pediatrician that will diagnose just by symptoms, but that's extremely rare). I skipped the biopsy because I was diagnosed while in grad school (no dining hall requirements) and didn't want to pay for it. It could also be something they are using to clean the tables at school, or other things as well. Good luck sorting it out.

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        • #5
          Her teachers are already in awe as to how healthy her packed breakfasts/lunches are (yet foreign to them). I let her have a "tray day" (cafeteria) occasionally, and to this day, she's been on the negative "talk to teacher" category as far as behavior on those days. I could and would send alternate treats with her, but this has only now come to my attention as being more than that.

          To be honest, with the negative press given to "caveman diets" and "supposed gluten intolerance" in the US these days, I'd almost rather saturate her with gluten for a little while and have an official diagnosis than navigate the muddy waters we'd face otherwise. To be honest, we're an inch away from either homeschooling her (our original intent) or going Montessori, but that's another topic. Regardless, there may be situations where having a definite diagnosis may be of help. I don't want to damage her intestines any further if she's truly celiac/intolerant, yet I don't want to give her poison in order to get that diagnosis either. ::sigh:: She definitely has a behavioral reaction--just tonight she ate a cake pop given to her at the dance, and suddenly she was absolutely gone to us. In another world, which we had to coax her from for her to realize we were trying to talk to her. Wow.

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          • #6
            Sounds like she needs a gluten trial then, ASAP. Even if you home school her you will end up sending her to high school and hopefully college so she WILL need the diagnosis at some point. The gluten trial will be so much easier now when she's younger and will heal from it more quickly.

            If you plan to home school high school then please PM me and I can give you the details of why it's not a good idea (I tutor and have a lot of experience with home schoolers, since I was home schooled myself).

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            • #7
              Wow notlupus, just wow. Not the thread for this actually so I am saying nothing.

              Meeshar, maybe the diagnosis might be a good idea then. Its really something you will have to weigh up.
              Last edited by Ayla2010; 02-16-2013, 08:56 PM.

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              • #8
                I don't understand why anybody thinks they "need" the diagnosis. Do you believe you will be required to present a script to somebody? Please enlighten me. I told my kids teachers that my kid was not allowed any gluten.... end of discussion. No problems for me....

                I mean by highschool and college your kids gonna be picking their own food. What do you think will happen with a diagnosis.... authority figures will see them reaching for a bagel and tackle them to strip it away before they takes a bite?
                Last edited by Neckhammer; 02-16-2013, 09:06 PM.

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                • #9
                  You clearly have never had to live with a celiac. Anytime I am forced to eat food others have prepared I have a 50/50 chance of getting sick. Cross contamination is a huge problem and the only way to get the college dining staff to let you out of the meal plan is with a diagnosis.

                  My SO is in deep, deep trouble right now because he was too lazy to put a pizza pan in the sink and flipped it over on the counter. I moved it, prepped my food in that general area, and am now having a reaction to it (I thought the pan was clean and face down to avoid dust so I didn't clean off the counter because I was using a plate). There were no visible crumbs on the counter, and my food never directly touched it but now I'm having massive heartburn and bloating that will last for days. It's not as simple to deal with celiac as you think.

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                  • #10
                    Originally posted by Neckhammer View Post
                    I don't understand why anybody thinks they "need" the diagnosis. Do you believe you will be required to present a script to somebody? Please enlighten me. I told my kids teachers that my kid was not allowed any gluten.... end of discussion. No problems for me....

                    I mean by highschool and college your kids gonna be picking their own food. What do you think will happen with a diagnosis.... authority figures will see them reaching for a bagel and tackle them to strip it away before they takes a bite?
                    Yes the school has to respect it. I didn't push the birthday cake thing, as I know its not often, but we also don't have an allergy to worry about.

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                    • #11
                      Originally posted by notlupus View Post
                      You clearly have never had to live with a celiac. Anytime I am forced to eat food others have prepared I have a 50/50 chance of getting sick. Cross contamination is a huge problem and the only way to get the college dining staff to let you out of the meal plan is with a diagnosis.

                      My SO is in deep, deep trouble right now because he was too lazy to put a pizza pan in the sink and flipped it over on the counter. I moved it, prepped my food in that general area, and am now having a reaction to it (I thought the pan was clean and face down to avoid dust so I didn't clean off the counter because I was using a plate). There were no visible crumbs on the counter, and my food never directly touched it but now I'm having massive heartburn and bloating that will last for days. It's not as simple to deal with celiac as you think.
                      With a celiac diagnosis, will the school ban all gluten? Like with nut allergies and banning nuts? Cos somehow I doubt that.
                      So even a diagnosis won't prevent accidental contamination.
                      As it is, with the nuts, even though there are foods prepared that could have touched nuts, like the packaged foods, those are not banned because its so minimal, but that isn't going to matter to the child with the nut allergy.
                      So all these same things may have been in contact with wheat, so all I am saying is how will the diagnosis change much? Something to think about.

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                      • #12
                        Originally posted by Ayla2010 View Post
                        With a celiac diagnosis, will the school ban all gluten? Like with nut allergies and banning nuts? Cos somehow I doubt that.
                        So even a diagnosis won't prevent accidental contamination.
                        As it is, with the nuts, even though there are foods prepared that could have touched nuts, like the packaged foods, those are not banned because its so minimal, but that isn't going to matter to the child with the nut allergy.
                        So all these same things may have been in contact with wheat, so all I am saying is how will the diagnosis change much? Something to think about.
                        The diagnosis means she gets an IEP and all sorts of essential accommodations that would not be available otherwise. Tables where playdoh (wheat based) will not be used, no snacks in the classroom, etc. It all depends on the school and the individual child's sensitivity level, but without a doctor saying she needs it she gets NOTHING. Play doh really is the devil for celiac kids. Many of my students have had 504 and IEPs and they really are essential for getting fair treatment and a chance to learn without fear of illness.

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                        • #13
                          So no other kids get to use it either? Or does your daughter get kept separate?
                          IEP?

                          Its a good thing of course, I am not saying its not, but there is a lot the school will have to stop at least in a celiacs class, and I just can't imagine it here at least.
                          So what about packaged foods? Would that not affect your daughter or you if you came in contact even a little of it? Id love to see them banned in schools personally but I know it will never happen. What about if her friends have sandwiches for lunch?

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                          • #14
                            Thanks, notlupus, I think that public high school with a basis of either homeschooling or Montessori is a good thing. It's hard to be a high achiever in a field of mediocrity and social hierarchy. She is only almost 5 and yes, I think this has to happen now. Her previous doctor in NC (a family practice doc, not a pediatrician) was awesome. To this day I rue his retirement because when I told him that we didn't feed her jarred mush (she got what we ate and could handle, aka baby led weaning) he was ecstatic because we did what he did with his 8 kids. I miss him.

                            I hate the idea that we have to fit AROUND modern medicine. That's why I am both for and against feeding my child poison (i.e. bread, McNuggets, Little Debbies, etc.) in order to not get flack from the ignorant doctors that we've seen so far. I'm sorry, but when I took her in for her physical to be eligible for pre-K, I saw an obese toddler drinking orange soda out of a bottle, yet the doctor was visibly shocked that she had never had any visits to the doctor that weren't well visits, therefore she's never had antibiotics. (I'd like to keep it that way as long as possible)

                            Sadly, I think that she has to go through this. Her school is already a peanut-free zone, as well as a latex-free zone, but gluten free might break them. I'm not really a fan of the whole "x-free zone" crap, I'd just rather send her with her own food, and be notified if there were a birthday/holiday/etc. where the other kids get treats and she'd feel left out. I just noticed this today, and don't have any diagnoses yet.

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                            • #15
                              Meeshar that sounds like the best thing.
                              The point I was trying to make, but not sure if I explained well, was that IF the diagnosis would completely protect her from all (But I guess making everyone else miss out, if it would even happen that way), then it would be worth going through. I just can't see how without removing everything packaged as well, that nut allergies and celiac's would be completely protected.

                              W

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