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 Celiac.com!
    eNewsletter
    Donate

New Here And Need Help With School Policy


HappyPlace

Recommended Posts

HappyPlace Newbie

Hi,

 

I'm new here and was hoping for suggestions/ advice for a school situation that we are struggling with.

 

My 6 year old son can't eat gluten (we haven't been able to test for celiac because he has never been able to ingest it directly - he reacted severely to it through my breastmilk from birth.) He is also allergic (non-IgE mediated) to rice. His reaction to cross-contact, even just a crumb, is mucousy, intestinal bleeding, and lots of it.

 

While gluten-free without rice is challenging, we've learned to manage it over the past 5+ years. However, we were blindsided the week before school started this year with an extreme nut allergy policy. He is not allowed to bring anything that is made in a facility that uses peanuts, tree nuts or sesame (and technically, that includes my home kitchen). This eliminates almost every packaged food that is safe for him, including the flours and guar gum I use to bake.

I can't purchase flours or guar gum locally to meet these requirements and it is ridiculously expensive to have to order them through the mail in the quantities necessary for my family- because of his rice allergy I have to make almost all of our baked goods and most everything else from scratch.

 

While I understand the severity of nut allergies, I think this particular policy is over the top when it interferes with my ability to send a safe lunch with enough calories for my son. He has already lost a pound since the start of school 2 weeks ago. I think the thing I find most galling about this is that the school kitchen that the teachers use actually has nuts and peanut butter in it.

 

I have an appointment with his allergist at the end of the month, but in the meantime,

has anyone here ever had to deal with anything like this? 

 

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 57
  • Created
  • Last Reply
weluvgators Explorer

Our experiences are in Australia, but we negotiated nut policies when we first came. Most if not all schools here are nut free, but they do not go to shared facility declarations for what others can eat. I don't think there is good basis for that. We were actually able to negotiate that our kids were allowed to bring nut milks because of their diet restrictions. Good luck, Mama! I know how exhausting these continual negotiations can be.

Link to comment
Share on other sites
Mizzo Enthusiast

We have been gluten and nut free in school for years. However, my DD can have rice so eliminating that certainly makes it very challenging.  Do you have someone with nut allergies in your child's classroom ? If you don't , you may have lotz of wiggle room with the (made in facility rule ) if you do you should start with a request for change in classroom .   There may not be many rice free/nut free packaged foods but home made meals can be supplied and we have had usage of microwaves in school for years .  Start with a sit down mtg with the principal, I have found them to be more accommodating than expected.

 

good luck 

Link to comment
Share on other sites
dilettantesteph Collaborator

That policy sounds crazy.  I can see not using a shared facility for food that the allergic individuals are consuming, but not for food others are consuming.  I don't think that there is any science behind that.  That packaging warning is not even required.  What does the school do, phone all facilities of all the places that families use?  Do they even check?  How reasonable is this policy if there are nuts in the teacher's kitchen?  Can you bend the rules?

Link to comment
Share on other sites
StephanieL Enthusiast

There are people who are allergic enough that they need that strict a rule.  They are few and far between.  

 

That said, facility warnings are 100% optional. The school doesn't know that something is from a nut free facility because they manufacturers don't have to say that and I HIGHLY doubt that every single snack coming in is from a PN free facility.  I would not pack anything with nuts in it but "processed in" free school- I doubt that is happening at all. 

 

The school won't tell you if there is an allergic child in the school so I would set up an area where your kid eats slightly away from others  (but not too removed) and call it a day. I would also make sure your child knows there is no sharing.  Setting it up this way, if there is a child with a severe enough nut allergy that it would be an issue, they can park that kiddo on the other side of the table or whatever so BOTH kids are safe!

Link to comment
Share on other sites
mommyto2kids Collaborator

I would try to be understanding. What if that was your child? Wouldn't you be glad that there was a policy? I was talking to our school kitchen worker and she made an interesting observation. She said that most kids, all kids throw away most of their lunch at school. She said kids need very little food at school They just want to get it done with and go play. With that in mind, think of lunch as a snack and don't stress it so much. Send some nice fruits and and snacks. But feed him a big lunch when he gets home. That is what my kids do and they aren't gluten-free. at school. They eat mostly gluten-free here because that is all I fix.

Link to comment
Share on other sites
bartfull Rising Star

Hard boiled eggs? Lettuce wraps with various different meats? Cheese? Fruit?  

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Cara in Boston Enthusiast

Our school is nut free (not to the extent of yours) so lots of our favorite snacks are out.  However, it is just one meal a day.  I send his lunchbox full of fruits, yogurt, mini kebabs made from ham and cheese, meatballs, veggies and dip, hummus, hard boiled eggs, etc.  Mostly foods that are naturally gluten free AND nut free.  Since I bake with mostly almond flour, I just don't send any baked goods in his lunch.  He is getting plenty of food and if he is hungry when he gets home, no problem.  If I need to add something more "filling", I do popcorn.  He also likes "flax muffins" (ground flax seed, eggs, brown sugar, baking soda, fruit) and those are very filling (just google it . . . many people on low carb diets love them)

 

I think you can come up with plenty ideas that will work.  It won't be as convenient as pre-packaged food, but it will work.  Get a bento-style lunch container so you can do a variety of foods.  We like Rubbermaid "lunchblox".  Great for dips, yogurt, salads, etc.

Link to comment
Share on other sites
weluvgators Explorer

But the "policy" is fundamentally flawed, and that is the issue in my opinion. Technically, the home kitchen is a facility with nuts. I appreciate the severity of nut allergies, and we are very mindful of our own consumption to minimise/avoid risk to others. But policies that have to be ignored to be practical are dangerous. We ask which allergies are in our kids' classrooms and other close classes. We no longer need nut products in their school diets, so they eat nut free at school. As well, they wash face and hands with soap and water after eating nut products at home before school. Those types of policies are more important than declaring an impossible and impractical policy that cannot be understood and reasonably implemented. We also keep kiwi at home because our current school has an anaphylactic kiwi allergy child.

I hope you can find some safe foods that are practical for you and your child. Freedom Foods and Orgran are a couple of Australia brands that cater to gluten free living, and both have comprehensive nut policies as well. My kids eat a fair bit of food at school. I don't know the extent of your restrictions, so let us know if you want more food/snack ideas. My kids like sausages with beans, sun butter and jelly sandwiches, roasted zucchini with rosemary oil, salt and pepper, red pepper/carrots/celery with and without hummus, oranges/apples/nectarines/peaches/blueberries/strawberries, corn chips/tortillas with nacho/taco fixings, potato chips, cheese, custard, yogurt. All of my kids eat differently and their preferences change over time.

Link to comment
Share on other sites
SMRI Collaborator

I would try to be understanding. What if that was your child? Wouldn't you be glad that there was a policy? I was talking to our school kitchen worker and she made an interesting observation. She said that most kids, all kids throw away most of their lunch at school. She said kids need very little food at school They just want to get it done with and go play. With that in mind, think of lunch as a snack and don't stress it so much. Send some nice fruits and and snacks. But feed him a big lunch when he gets home. That is what my kids do and they aren't gluten-free. at school. They eat mostly gluten-free here because that is all I fix.

 

It is her child, but with different dietary needs.  Why should this one child's dietary needs supersede her son's?  The nut allergic child also needs to adapt to being in a school where this policy will only give a false sense of security....and a child not eating lunch during the school day just is not a good idea at all.  Sorry that you got such bad information from the kitchen worker but chances are kids throw away their lunch because it just doesn't taste good.  It's not that they don't need to eat.  Every teacher in the school could point out the kids in his/her class that came to school with a good breakfast and ate a good lunch.....

Link to comment
Share on other sites
StephanieL Enthusiast

The potential of a kid dying kind of does supersede another kids dietary needs.  There ARE kids who need that wide of an accommodation.  

 

I am not a proponent of schools banning nuts for exactly as you stated, it gives people a false sense of security and TYPICALLY is overdoing it.  There are many different ways people choose to deal with it and it sounds like the school has made that decision so I don't think arguing the policy is really worth it at this point. I think giving ideas how to work with the policy is more important at this point unless the OP is looking to fight the policy, which I would if I felt strongly about the need for my kid to have nut products at lunch.  I do think there could be a meeting in the middle if it is NECESSARY to have nut products in the kiddos lunch.

Link to comment
Share on other sites
dilettantesteph Collaborator

There are people who are allergic enough that they need that strict a rule.

 

Can you provide evidence for this statement?

Link to comment
Share on other sites
weluvgators Explorer

The potential of a kid dying due to allergies extends far beyond nut allergies. One of my children has anaphylactic wheat allergy and had to be hospitalised twice with emergency surgery before we could get the school to consider her needs seriously.

I don't think most here generally oppose accommodating nut free school policies, but the "no one can eat food from a nut shared facility" is an impossible "policy" and demonstrates dangerous ignorance from the very people responsible for keeping ALL children in their duty of care safe. I have never run across the suggestion before that such an imposing policy is required for any allergy. I would appreciate if anyone can share information that supports such an extreme policy. I would be very curious what the school policy is for children when they get to school for hand and face washing of all students, as that seems a far more legitimate exposure potential in our experiences.

HappyPlace, I am sorry to report that every single Freedom Foods product in my cupboard with one exception had rice in it. Good luck getting it all sorted. We had a very hard, hard, hard time when we started in the school system in the US. I hope that you have understanding and compassionate people to work with.

Link to comment
Share on other sites
StephanieL Enthusiast

(I messed up the quoting, sorry)


"The potential of a kid dying due to allergies extends far beyond nut allergies. One of my children has anaphylactic wheat allergy and had to be hospitalised twice with emergency surgery before we could get the school to consider her needs seriously.

I don't think most here generally oppose accommodating nut free school policies, but the "no one can eat food from a nut shared facility" is an impossible "policy" and demonstrates dangerous ignorance from the very people responsible for keeping ALL children in their duty of care safe. "

 

I completely understand this. My DS has anaphylaxis to 4 foods so I get that there are other potentially deadly allergies which is another reason I am NOT in general support of a ban on ANY food.  I believe I have said I don't support it. I also said I completely agree that the facility is a complete overdoing of it esp because that is a purely voluntary warning and just because something doesn't say it's from a shared facility doesn't mean it isn't. 

 

BUT if that is the school policy there should be ways to work with them to allow the PO's child to bring in what she/he needs while keeping the other children safe as well. 

 

Can you provide evidence for this statement?

That there are people with airborne and contact allergies to nuts?  There is plenty of evidence out there that there are some who do require that level of accommodation.  

Link to comment
Share on other sites
dilettantesteph Collaborator

No, I was looking for evidence for your statement that a child's allergy would require people around him to only eat food obtained from an allergy free facility.

Link to comment
Share on other sites
StephanieL Enthusiast

No, I was looking for evidence for your statement that a child's allergy would require people around him to only eat food obtained from an allergy free facility.

 

There are people who are that highly sensitive. I don't exactly understand what evidence of that I can provide you with aside from people I personally know/

Link to comment
Share on other sites
dilettantesteph Collaborator

It should then not be stated as a fact per board rules: "5) Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry."

Link to comment
Share on other sites
StephanieL Enthusiast

It should then not be stated as a fact per board rules: "5) Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inq

Are you serious?  I am stating there are people who are sensitive enough that they need certain accommodations to be safe in a school environment.  I have stated SEVERAL times that they are few and far between. I have stated that there are ways to make accommodations so that every student is kept safe. 

 

I am sorry that my years here on this site and my years living with a child with life threatening food allergies doesn't give me any credibility with you however may people here post personal EXPERIENCES.  I do not have a study on how many kids need these kinds of accommodations but that does not mean that it doesn't happen.  Again, as I stated most likely because they are few and far between. 

 

I'm really trying to understand what your issue is.  There is a rule and the OP can fight it or deal with it however they see fit. Why are you questioning what I know and have seen, because there isn't a study on it?  

 

I am done with this thread as I obviously have nothing credible to add.

Link to comment
Share on other sites
bartfull Rising Star

There are quite a few folks here who claim they are so sensitive that they can't eat anything from a facility that also processes wheat without getting a celiac reaction.

 

I am sure there are kids with peanut allergies who are just as sensitive. And with the potential for kids at school to trade lunches or desserts, plus the potential for kids to not wash their hands before touching their own food and after touching other kid's food or hands, it is only common sense that they MIGHT react. And with peanut allergies being so deadly in some kids, I can understand and even applaud the rule at this school.

 

Don't we all wish there were rules like that in place for gluten? And although gluten can kill us over the long term, peanuts can kill a highly allergic person instantly. If one mother MIGHT be spared the heartbreak of losing a child due to peanut CC, it is all worth it.

 

IN MY OPINION.

Link to comment
Share on other sites
StephanieL Enthusiast

.

Link to comment
Share on other sites
BlessedMommy Rising Star

If the school also has a shared kitchen with peanut and nut products, then I would take this rule to mean that the rule for dedicated facilities doesn't include one's home. I'm all for keeping kids safe, but it wouldn't be realistic to expect every family in the school to run a nut free house.

Link to comment
Share on other sites
africanqueen99 Contributor

Is this policy for the classroom or the school?

 

My daughter has been in a nut-free CLASSROOM before (meaning everything that enters the room must be commercially prepared in a nut-free facility - this would be for student snacks, holiday and birthday parties, etc), but the LUNCHROOM was a free-for-all with the nut-free kids all sitting at the same tables.

 

Personally, I don't have an issue with a nut-free classroom (partly, because I'd like to see hers as a gluten-free classroom, but that's not a fight I want to deal with), but I can not imagine a scenario that would allow for a nut-free LUNCHROOM.  I mean, I send food that I prepared every day for lunch.  It's simply impossible to ask all families to not provide home prepared foods for lunch.

 

Am I missing something?

Link to comment
Share on other sites
IrishHeart Veteran

It should then not be stated as a fact per board rules: "5) Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry."

 

Oh come now, Steph..let's be real here ^_^

 

I have seen dozens of flagrant violations of this particular rule, especially on the super sensitive section where people's "anecdotal evidence" is ALL that is ever used to support various "theories" and thoughts and when moderators have asked for sources, we've been blasted for it.

 

I think you're taking issue with StephanieL here for no good cause. She's a mother of a child with severe allergies who has years of experience and

she is allowed to voice her thoughts without being jumped on for this sentence.

 

IN MY OPINION.

Are you serious?  I am stating there are people who are sensitive enough that they need certain accommodations to be safe in a school environment.  I have stated SEVERAL times that they are few and far between. I have stated that there are ways to make accommodations so that every student is kept safe. 

 

I am sorry that my years here on this site and my years living with a child with life threatening food allergies doesn't give me any credibility with you however may people here post personal EXPERIENCES.  I do not have a study on how many kids need these kinds of accommodations but that does not mean that it doesn't happen.  Again, as I stated most likely because they are few and far between. 

 

I'm really trying to understand what your issue is.  There is a rule and the OP can fight it or deal with it however they see fit. Why are you questioning what I know and have seen, because there isn't a study on it?  

 

I am done with this thread as I obviously have nothing credible to add.

 

You have every right to voice your thoughts and I find you very credible. I find nothing wrong with your statements and I hope you will continue to help other parents of children with allergies. 

 

Please do not get driven off--that would be a huge loss!

 

I know a few people who are highly allergic to various foods and substances (one on this board), so I did not find your statement unreasonable or unfounded at all!

Link to comment
Share on other sites
GottaSki Mentor

.

I've read through this thread and believe that your posts would be helpful to others and not in need of clarification.

Your friend, the bubble girl and her bubble kids along with the bubble grands ;)

Link to comment
Share on other sites
dilettantesteph Collaborator

Oh come now, Steph..let's be real here ^_^

 

I have seen dozens of flagrant violations of this particular rule, especially on the super sensitive section where people's "anecdotal evidence" is ALL that is ever used to support various "theories" and thoughts and when moderators have asked for sources, we've been blasted for it.

 

Exactly, and it is because of moderators response to thit that I have reread the board rules and I am very careful to provide evidence for what I say, or to state it as experience or opinion.

Link to comment
Share on other sites

Archived

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



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...