Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Super Sensitive Teen


jhuebner

Recommended Posts

Roda Rising Star

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

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....

domesticactivist Collaborator

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.

domesticactivist Collaborator

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.

salexander421 Enthusiast

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:

Roda Rising Star

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

Gemini Experienced

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

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.

stanleymonkey Explorer

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,

salexander421 Enthusiast

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!

IrishHeart Veteran

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!!

Gemini Experienced

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....

GFinDC Veteran

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

mushroom Proficient

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.

IrishHeart Veteran

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???

domesticactivist Collaborator

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.

Lisa Mentor

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.

IrishHeart Veteran

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

psawyer Proficient

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,763
    • Most Online (within 30 mins)
      7,748

    Donna Williamson
    Newest Member
    Donna Williamson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      For back pain, I take a combination of Cobalamine B12, Pyridoxine B 6, and Thiamine B 1 (in the form Benfotiamine), which have an analgesic effect.  These three B vitamins together work way better than those over the counter pain relievers.  Theses are water soluble B vitamins that are easily excreted via the kidneys if not needed.  Thiamine will also help the nausea. Interesting Reading... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/#:~:text=Some of these processes include,Analgesics
    • knitty kitty
      @stephaniekl, welcome to the forum, Is your daughter taking any nutritional supplements?   Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.   I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies.  Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system.  Thiamine helps the immune system fight off viruses like those tick borne illnesses.   Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine. Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.   Keep us posted on your progress! Interesting Reading... The importance of thiamine (vitamin B1) in humans https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].
    • trents
      Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while? I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.
    • stephaniekl
      We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.   We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses.  Thanks for your help! 
    • RMJ
      A much better suggestion than that of the new doctor!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.