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jhuebner

Super Sensitive Teen

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As a mother of super sensitive children, having integrated two of them into the school system, I feel it is very important to review hand washing procedures with your child. We have Individual Health Care Plans for each of them to review with all necessary parties that handwashing RIGHT before eating is critical to their health and well being. Our health care plans also identify the other necessary accommodations that we have found necessary to keep our children safe in school. And it is shocking to see how hand washing before and after eating are discouraged in our schools.

Inst that the truth. My goodness, I think my kids school should buy stock in hand sanitizer. They encourage it's use prior/after everything and has mostly replaced handwashing before lunch, snack or parties. UGG! I was very adamant that my kids were to WASH with soap and water period because the sanitizer would not get gluten off their hands. One year, before either of the kids were gluten free, I had to send in soap and lotion for my oldest son to use. He had such a bad reaction from the school soap and all the sanitizer. His hands were a mess. I told his teacher that year that he wasn't to use the sanitizer at all. With how raw his hands were, I felt with his cracked irritated skin he was more at risk for infection from that. I think hand sanitizer is way overused!! Sorry to get off on a tangent. :P


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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They encourage it's use prior/after everything and has mostly replaced handwashing before lunch, snack or parties. UGG!

Horrifying to hear this. Bugs aren't the only bad things that get on our hands. I wouldn't want to be eating dog hair from a chair, or gas from the gas pump handle, or someone's snot from a railing, however sanitized they were....


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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The cross reaction from gluten-free oats is not a gluten issue....its a cross reaction and many Celiacs can tolerate gluten-free oats well. Protein structures may be similar but it's not wheat protein and only a small percentage of people react this way.

This is what "cross-reactive to oats" means, as I said. The Bob's Red Mill gluten-free facility is gluten-free, however, it processes gluten-free oats. People who are cross-reactive to oats can react to the other products processed there.


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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Inst that the truth. My goodness, I think my kids school should buy stock in hand sanitizer. They encourage it's use prior/after everything and has mostly replaced handwashing before lunch, snack or parties. UGG! I was very adamant that my kids were to WASH with soap and water period because the sanitizer would not get gluten off their hands. One year, before either of the kids were gluten free, I had to send in soap and lotion for my oldest son to use. He had such a bad reaction from the school soap and all the sanitizer. His hands were a mess. I told his teacher that year that he wasn't to use the sanitizer at all. With how raw his hands were, I felt with his cracked irritated skin he was more at risk for infection from that. I think hand sanitizer is way overused!! Sorry to get off on a tangent. :P

Yes, yes, yes!!! We are homeschoolers but my kids do classes and camps. I have personally told teachers "handwashing with soap and running water, not sanitizer" is necessary before eating for my son, and after eating for all children using shared materials, and put it in writing, with a confirmed response as well.

In one class the teacher seemed very considerate and respectful, and eager to comply. He even shared info about having had a child who was immunocompromised and needed special accommodations himself... but first day of class, even though there was a sink in the classroom, the teacher pulled out hand sanitizer instead and said they'd all be using it before and after eating. Fortunately I was still there and was able to speak up that sanitizer is not the same as washing in the sink. Grrrr.


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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Gemini, you're are certainly welcome to disagree with me. Although you seem to have missed the part where I said that sensitivity varies widely and it takes time to figure out where you fall on the spectrum. I love coming on these forums and hearing everyone's varied point of views. When you disagree with someone though you don't have to be quite so condescending. And as far as "bashing" goes, I'm not really sure how I came across as "bashing dedicated facilities". I'm just sharing my experiences. Everyone on here is just trying to help each other out. I am not trying to scare anyone, just offering my point of view.

OP, sorry to take this off topic! I promise I won't turn this into a back and forth debate on who's right or wrong, I know you are here for advice and this in no way contributes to that. :rolleyes:


Proud breastfeeding, toddlerwearing, part time cosleeping, stay at home mom. Positive for two copies of DQ8, negative celiac panel after 3 month gluten challenge; biopsy showed gastritis, inflammation in the esophagus, and hiatial hernia but no signs of celiac. Possible DH. Gluten free as of 3/11/2011

ODD 3 1/2, positive for DQ8 and DQ6, negative celiac panel after 3 month gluten challenge. Gluten free as of 3/10/2011

YDD 2, no testing. Positive for DQ8 and DQ6. Possible DH. Gluten free as of 3/10/2011

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OP, I'm curious how your son is doing? Have you found anything out? We are all thinking about you


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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Gemini, you're are certainly welcome to disagree with me. Although you seem to have missed the part where I said that sensitivity varies widely and it takes time to figure out where you fall on the spectrum. I love coming on these forums and hearing everyone's varied point of views. When you disagree with someone though you don't have to be quite so condescending. And as far as "bashing" goes, I'm not really sure how I came across as "bashing dedicated facilities". I'm just sharing my experiences. Everyone on here is just trying to help each other out. I am not trying to scare anyone, just offering my point of view.

OP, sorry to take this off topic! I promise I won't turn this into a back and forth debate on who's right or wrong, I know you are here for advice and this in no way contributes to that. :rolleyes:

I was in no way condescending to you, merely pointing out the obvious with regards to how people can react. I do agree that hand washing before meals is a necessary must but reacting to a washed plate at someone else's house is a bit far fetched. Don't people rinse a dish thoroughly after washing? You couldn't possibly react to that unless they didn't rinse and the soap would have to contain a gluten component....which I have yet to find after almost 7 years gluten free. It's situations like these that will make a newbies head spin and something they need not worry about at all. That's my idea of help to others...dispelling rumors posted on Celiac forums that put unnecessary fear into the minds of those trying to learn the ropes of this diet. I'm not here for advice as I've already learned the ropes to the point where I live a healthy normal life. I'm not constantly trying to re-invent the wheel.

Oh..and I didn't miss your point about varying levels of sensitivity. That is very true but a Celiac reacts the same way as far as how it can happen. You need to ingest gluten to start the chain reaction....you can't be glutened by just being in the same room as the stuff or just being in a non-Celiacs house. That's just unnecessary fear.

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It's situations like these that will make a newbies head spin and something they need not worry about at all. That's my idea of help to others...dispelling rumors posted on Celiac forums that put unnecessary fear into the minds of those trying to learn the ropes of this diet. I'm not here for advice as I've already learned the ropes to the point where I live a healthy normal life. I'm not constantly trying to re-invent the wheel.

Oh..and I didn't miss your point about varying levels of sensitivity. That is very true but a Celiac reacts the same way as far as how it can happen. You need to ingest gluten to start the chain reaction....you can't be glutened by just being in the same room as the stuff or just being in a non-Celiacs house. That's just unnecessary fear.

Amen.

This is something I have also tried to express in various threads regarding what factors may perpetuate symptoms. I think GEMINI has said it best and perhaps it will be considered by the OP in his quest to determine what's happening with his son.


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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I'm a teacher and I banned sanitizer in my classroom, the over use over hand sanitizer is like the over use of antibiotics! I taught in the middle east, and most kids who had nannies were sterilized every time they touched something, crazy huh?

to the OP, I'd try cutting out all dairy, caesin can be a big issue even for people who aren't celiac. The body has a tough time breaking down the protein in milk,

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OP, I'm curious how your son is doing? Have you found anything out? We are all thinking about you

I'm curious as to how your son is doing as well. Hope you are getting helpful answers!


Proud breastfeeding, toddlerwearing, part time cosleeping, stay at home mom. Positive for two copies of DQ8, negative celiac panel after 3 month gluten challenge; biopsy showed gastritis, inflammation in the esophagus, and hiatial hernia but no signs of celiac. Possible DH. Gluten free as of 3/11/2011

ODD 3 1/2, positive for DQ8 and DQ6, negative celiac panel after 3 month gluten challenge. Gluten free as of 3/10/2011

YDD 2, no testing. Positive for DQ8 and DQ6. Possible DH. Gluten free as of 3/10/2011

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I'm a teacher and I banned sanitizer in my classroom, the over use over hand sanitizer is like the over use of antibiotics! I taught in the middle east, and most kids who had nannies were sterilized every time they touched something, crazy huh?

Again, AMEN on the hand sanitizer.

thanks for that thought!!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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I'm a teacher and I banned sanitizer in my classroom, the over use over hand sanitizer is like the over use of antibiotics! I taught in the middle east, and most kids who had nannies were sterilized every time they touched something, crazy huh?

to the OP, I'd try cutting out all dairy, caesin can be a big issue even for people who aren't celiac. The body has a tough time breaking down the protein in milk,

I agree about that stupid hand sanitizer! It is so bad to use. What is up with people today...germaphobes! When I think of what we used to put into our mouths as kids and we never washed our hands like people do today...only after going to the bathroom, pretty much, you wonder how we survived? It's been proven that too much clean will keep you sick as your body develops no natural defenses towards anything.

I have to admit that since going gluten-free and getting healthy, I do not do vaccines, flu shots or use hand sanitizer, I fly on planes and I never get sick anymore. This is not rocket science....

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Well, I hope JHuebner is getting some good info too. I think we all agree there are lots of possible gotchas to watch out for with gluten. I prefer home made real soap now myself, not the store bought detergent soap bars. Those dry your skin out too much IMHO.

I am one of the 10 to 15% of celiacs who react to oat protein (oat gluten) as well as wheat, barley, and rye. I used to love oats for breakfast and had lots of neat ways of making them taste good. Oh well. We are not the majority for sure, but there are some of us. Hopefully the kid won't be oat sensitive though. And he can eat oats with sliced bananas, raisins, peanut butter, and cinnamon. Good stuff! They aren't too bad with salt and pepper and olive oil too. Oh well again. :)

I think the hand washing is a issue that needs to be followed up on. Some of us do react to very low levels of gluten and washing hands before eating may make a big difference for him. And it's a simple easy to do action that shouldn't be a big crimp in his social life.

By the way JHuebner, as you can see we get pretty passionate about gluten free eating here sometimes. But I for one am not anxious about it either, I just learned how to live with the diet and that's that. It gets much easier after doing it a while.

I hope you have success with your son's diet and have a Merry Christmas! :D


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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First question before I sat down at the table (from my farmer's wife mom): "Have you washed your hands?" So this is nothing new, because I am certainly not new B) And we were not known at that time to be a celiac family.

And I used to have the most horrible stomach cramps at school after my oatmeal breakfast :unsure: Never touched the stuff since.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

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I was always nagged to "wash my patties" before meals (you know, as in patty cake :) )

(and after using the loo, of course!)

and we ate oatmeal a few times a week as kids. Siblings said UCK. not me--yum!

It's still my favorite breakfast and fortunately, I can tolerate gluten-free ones occasionally.

Another case of "everyone is different". We are a mixed bunch for sure.

You know...

I am wondering if the OP has figured out what happened all by himself and

will never return to tell us ??? :blink:

Or perhaps he has been overwhelmed by TMI???


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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I was in no way condescending to you, merely pointing out the obvious with regards to how people can react. I do agree that hand washing before meals is a necessary must but reacting to a washed plate at someone else's house is a bit far fetched. Don't people rinse a dish thoroughly after washing? You couldn't possibly react to that unless they didn't rinse and the soap would have to contain a gluten component....which I have yet to find after almost 7 years gluten free.

I'm getting really tired of this condescending discounting of other people's experiences, Gemini. Of all the ways he could have been glutened, the plate made the most sense in a number of ways (timing, likelihood, the only thing he was putting in his mouth that could have any chance of being glutened, etc). His gluten reactions are very specific and obvious so I'm confident it wasn't something else.

Plates have not been a problem at my mom's house and she does hand wash some... however, her kitchen is not in a constant state of baking, either. This friend does constant baking, and does not have a dishwasher. She uses the same sponges and rags for all her dishes, and almost every dish she makes contains gluten. Dishes sit out in the kitchen to dry, or get wiped with a dishtowel that hangs in the kitchen where all that baking takes place. When we first got serious about cc I didn't let my kids eat there at all. Normally I'd bring my son a plate, but I forgot, and had relaxed thanks to advice like yours.

Since the plates were put away I didn't think about it until my son was sick and we looked back for a potential cause. In the future I will always rinse dishes at her house myself, and not wipe and dry them with her towels! In cafeteria settings where dishes are washed by hand and then rinsed and through a sanitizer, I've seen plates come out still covered in pasta scum. The sponges and dishwater are full of gluten, too.

There are risks and for someone who is supposedly gluten-free and still has high numbers they should be considered. People in this situation should get tested for other autoimmune diseases that could elevate levels, and also look out for cross-contamination.

Whether you believe it or not, my son was still sick until we got serious about cross-contamination. When he goes to a class every day all day for a week, inevitably he ends up glutened. School is full of kids eating all sorts of gluten crap, and spreading it all over the pace. That's a real risk.

...Not something to be obsessive-compulsive and fearful about, but something to take precautions against.


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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I see numerous valid reasons why the original poster has not returned. :blink:

He has had many options suggested to mull over. He alone can determine which one fits for his family concerns. :)

Perhaps we should conclude this thread.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Seems like a good idea to me. We've covered all the bases.


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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I see numerous valid reasons why the original poster has not returned. :blink:

He has not been here for a week (last logged in on the 15th).

He has had many options suggested to mull over. He alone can determine which one fits for his family concerns. :)

Perhaps we should conclude this thread.

Seems like a good idea to me. We've covered all the bases.

And so it shall come to an end.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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