Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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
      128,185
    • Most Online (within 30 mins)
      7,748

    Lawrence Bulington
    Newest Member
    Lawrence Bulington
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • JuggaloDad
      Thank you Scott, it means a lot especially with the speed you responded.. In life I've learned that you got to be openminded and open to understand and adjust  .Thank you again I hope she will come around to the adjustment as it's not going away and it's for her own comfort and health in the long run....Thanks
    • Scott Adams
      I’m so sorry to hear about the challenges you and your daughter are facing. A celiac diagnosis, especially during adolescence, can be overwhelming, and it’s understandable that she’s struggling with the lifestyle changes it requires. Coupled with the complexities of self-medication and signs of an eating disorder, this is undoubtedly a difficult time for your family. It’s great that you’re already engaged in therapies—this is a crucial step. For celiac disease, connecting with support groups (like those from the Celiac Disease Foundation) and working with a dietitian specializing in gluten-free diets can help ease the transition. For the emotional and mental health aspects, family therapy or support groups for parents of teens with similar struggles might provide additional tools and comfort. You’re doing the right thing by seeking help and information—stay patient and compassionate with both your daughter and yourself as you navigate this journey together.
    • JuggaloDad
      It is only the very start of this journey but it's actually been one of the hardest things we have had to deal with as parents.she started complaining about her stomach and after months and test after test the diagnosis came back as Celiac disease but while this was happening she has been self medicating with THC and also started making showing signs of a eating disorder, we are in therapies of all sorts in relation to these issues and well I'm just reaching out to find any and all information tools and knowledge as at 16 my daughter is fighting the change but it will be with her for a lifetime so I just trying to do all I can do ... If anyone can help with anything like anything mentioned please reach out to me.....thank you all for existing 
    • Wheatwacked
      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
×
×
  • Create New...