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

The school will not accomodate gluten-free/DF!

IntheMiddleofNowhere

Recommended Posts

IntheMiddleofNowhere Newbie
IntheMiddleofNowhere
Posted

I am a nursing student, and my children attend preschool.  The preschool uses the college's dining facility to cater all of their meals.  I spent time providing a training for the community college's dining facility staff on allergens, cross-contamination, and understanding the importance of strict avoidance for allergic individuals or in celiac disease.

There are a number of small children with celiac disease, allergies, and intolerances, whose parents are required to pay the same amount, but do not receive meals, and must send food to school with their children, because the dining facility cannot accommodate.  Of course, our family is one of them.  My daughter must be gluten and dairy free, while my son is only gluten free. 

I know that this is somehow illegal, wrong, or unethical, but don't know what steps should be taken.  The school claims no responsibility, and will not budge on the payment system to adjust the price for children unable to participate in the  meals.  The dining facility has claimed for many months that they are working on being able to accommodate, but it was recently revealed that they are actually working on a letter from their attorney to force parents to sign a "release of liability waiver" before serving the allergic children. When I provided the training 4 months ago, all of the staff displayed decent levels of understanding and interest.


What can I do to rectify this situation?  Who needs to be informed, or who can help "encourage" (force is okay as well, as long as my family doesn't have to get involved in a lawsuit) the preschool to provide an adjusted cost to these families?  If the dining facility is requiring a waiver, I am not confident in their ability to prepare, nor determination/dedication to provide "safe" food. (albeit, I understand why)

I am the person who initiated the chain of events, and have been pushing everyone along the way to be able to provide "safe" meals for the children, but at this point, I am fed up with everyone involved, particularly the preschool, because they seem to want nothing to do with the situation, and are making me deal directly with their vendor.

Advice please?!?! I don't want to ruin our relationship with the preschool, because the teachers are wonderful and my kids really enjoy it there... but for the sake of my family and many other current and future families... I don't want to just look the other way!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

This is not my area of expertise but here's a link about a 504 plan and the American Disabilities Act as it pertains to celiac disease:

Open Original Shared Link

Open Original Shared Link

I do not think that preschool,  which is not receiving government funding, falls under a 504 plan.  Preschool is optional (I think).  

Personally, I wouldn't trust anyone to prepare GF meals safely every single day ( I worked in food service all through college and I do not think it has changed).    It is a risk that I rarely take as an adult.  My child is 15 and does not have celiac disease, but she only bought lunch ONCE back in the first grade.  It was horrible.  Every morning for the past 10 years, I have made her lunch.  Every...single...day.  Her lunches are much healthier and I purchased a Thermos for hot lunches.  She gets hot left overs like meatloaf, soup, stews, etc.

I can see why the school would want to have parent's sign a waiver.  It is scary to think you could cause a child's death who has an allergy.  Fortunately, this would not happen to a child with just celiac disease.  Not sure how such a waiver would stand up in court for a parent to sign-away a child's rights.  

See what other parent's have to say.  I think most end up just packing a lunch and working on how to avoid cross contamination within the classroom.  

Good Luck! 

StephanieL Enthusiast
StephanieL
Posted

I would perhaps call the OCR/DOJ and discuss the situation with them.  It it wrong? Maybe. Is it legal? Perhaps.  Depending on if there is government funding and many other factors will play into this stuff. 

In reality, most people with allergies/Celiac won't trust an institution to actually be able to manage these issues.  While many *could* force the issue through the DOJ, there has to be a LOT of trust that they know what they are doing. Reading every label every time. Calling for cross contact because it doesn't have to be listed to be sure it's safe.  The reality is most people just don't get it.  

SLLRunner Enthusiast
SLLRunner
Posted

In addition to what others have said, it seems to me the cost for the preschool is one thing, and then those who want meals should have to pay extra for them.  I would certainly write a letter to the head of the school asking that this be done.  If certain children are not getting meals then they should not have to pay for them, period. 

Even though you have educated the staff on precautions for children with celiac and food allergy, I would not trust that they would always do things to avoid cross-contamination.  It's probably a good thing they are not complying at this time.

kareng Grand Master
kareng
Posted

I think it is actually easier for the day care to serve meals they make than have to help a bunch of 3 year olds open all the packets and containers in individual sack lunches.  Harder to keep track of other, more lethal allergens, like peanuts.  So I doubt they would want to make buying lunch an option at this age.

Fair or not, I wouldn't let them feed my toddler.   They have made it very clear that they can't handle Celiac.  You have a few options,that I can think of right now,  like them or not - put your kids somewhere else, keep them home with a safe care provider or parent, bring their lunch and make sure the day care knows not to give your children any food that is not sent by you.  

Edit to fix bad typing

StephanieL Enthusiast
StephanieL
Posted
27 minutes ago, kareng said:

  Harder to keep track I'd other, more lethal allergens, like peanuts.  

Just a note, milk, egg, soy and so on can all be lethal.  I'm sure you know that but I just like to be sure people understand that the peanuts are not the only lethal allergy.  My kid has life threatening allergies to all of the above, 1 small bite of egg even baked into something and he has an anaphylactic reaction and it's very common.

kareng Grand Master
kareng
Posted
19 minutes ago, StephanieL said:

Just a note, milk, egg, soy and so on can all be lethal.  I'm sure you know that but I just like to be sure people understand that the peanuts are not the only lethal allergy.  My kid has life threatening allergies to all of the above, 1 small bite of egg even baked into something and he has an anaphylactic reaction and it's very common.

Sure.  Peanuts were just an example that most people recognize.   But if a kid in the class had a bad egg or banana or any other food allergy - it's easier to keep them away from the whole group, if the place is feeding them.   But I still think I would send thier lunch or find other arrangements.  Too scary for me.

 

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

Celiac.com Sponsor (A8-M):


IntheMiddleofNowhere Newbie
IntheMiddleofNowhere
Posted
  • Author

I really appreciate all of your responses!  You guys all realigned my thinking on one thing... what was I thinking to try to get the school to provide lunches.  I know what I was thinking... easier, "free" (since I'm already paying for it), and more variety than I send. ... but you guys nailed it.  We don't eat out, because I get sick almost everywhere that claims they do gluten free.  I am obsessive about not having gluten in our house, and not allowing any cross contamination with the small amount of dairy we do use now and then... yada yada...

You guys were right, I shouldn't have been pushing for them to be able to accommodate us.  I guess I was just so frustrated with the fact that the childcare is so expensive to begin with, and that part of that cost assumes that my children are getting the meals. When the school wouldn't change the price, I felt like my only option was to make the $$$ worth it somehow.  No price is worth my children's health.

SLLRunner and StephanieL - I agree with and appreciate those suggestions.  I think I can/will/should write a letter to the school about the situation.  I'm really not one of those crazy people who thinks that everyone should accommodate us, quite the opposite actually... so I think what it boils down to is that we are paying for a product that we are not receiving. 

Now the challenging risk is... will there be indirect ramifications to speaking up? Perhaps :-\  And if nothing comes of it... and I chose to keep my kids there... I will both look like I was whining with no back bone, and risk damaged relationships.

SLLRunner Enthusiast
SLLRunner
Posted
Quote

Now the challenging risk is... will there be indirect ramifications to speaking up? Perhaps :-\  And if nothing comes of it... and I chose to keep my kids there... I will both look like I was whining with no back bone, and risk damaged relationships.

It's all in the perception: I think you will come across a strong advocate. Besides this, it doesn't matter what other people think. :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.