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

Advice On Cafeteria Meals For Boarding School Student


LyndaLou

Recommended Posts

LyndaLou Newbie

This is my first post ever, but I've learned so much from this site. I hope you all can give me some much needed guidance.

My 18 year-old daughter is a senior in high school. She attends a public, residential high school about 3 hours from home. (It's a school for students that have shown academic talent in math and science.) It's an amazing opportunity for her. It's a 2 year school (juniors & seniors) located on a public university campus. The university cafeteria supplies the meals for all the students.

Since she lives in a dorm situation, she is limited in the food she can make for herself. She was diagnosed with Celiac this summer about 2 weeks before she moved back to school. We met with the student affairs head of the high school, the head of food services for the university, and the head chef of the cafeteria, and were assured they would work with us.

What has actually happened, has been less than ideal. The main problem comes from what I call the "front line workers". They keep telling Katherine to "just get something off the line" rather than make her a special plate.

And even when they do make a special plate, we think they probably just get food off the line. She has said that she feels like she keeps a low level of glutening all the time. She has missed classes because of full on glutening.

I have once again sent an email to the "powers that be", but wondered if anyone has any advice. We are in an unusual situation, in that she's still under the public high school jurisdiction, and the regulations they have to provide for students, and yet on a university campus, and I'm not sure how much they have to do to accommodate her.

Sorry this is so long, but I'm out of ideas.

Lynda

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Celtic Queen Explorer

I think I remember other people saying on here that Celiac is covered under the Americans with Disabilities Act, which means they would have to make some accomodation for her.

I think part of the problem is that she needs to speak up to the front line workers and explain to them how sick she'll get from the gluten. But I know it's not always realistic to expect an 18 year old to feel comfortable doing that. I'm more than twice her age and I'm still having problems with that. So I don't have any great advice on how to make her more assertive about that.

My only suggestion would be to keep bringing it up with the people "up top" in hopes that it trickles down. You may want to look up the ADA law and mention it to them. That might make them sit up and take more notice. Good luck!

Link to comment
Share on other sites
Mizzo Enthusiast

My experience in dealing with the cafeteria staff at our school has been.

1 Have conversations in person whenever possible

2. Be EXTREMELY grateful for them taking time to help your child ( I do this regardless of how I really feel *wink*)

3. Be clear that it's an autoimmune disorder but it responds like an allergy ( they will understand allergy )

4. Keep it simple , explain that contaminations are hard to avoid and ask them to do their best

Does your girl get a choice of foods now?

How many meals is she having there ?

Do they have gluten-free specific foods or is it natural foods they are preparing ?

Are they willing to buy gluten-free foods ?

I have been dealing with our cafeteria for 6 weeks developing food options and cooking processes. This is what we will be/are doing at her school (elementary) for 5 celiac kids

Each day is a designated gluten-free food item. ( no choices)

They have separate pans they line with parchment paper and all meals are baked.

The sides are simple like fresh fruit, yogurt, chips and gluten-free cookies.

Fresh gloves must be worn when dealing with gluten-free foods.

I don't know if any of this applies to you but I hope so.

Good luck

Link to comment
Share on other sites
Di2011 Enthusiast

Does she or can she get any on-campus medical professionals to advocate for her? If a doctor or clinic nurse could speak to cafeteria staff in person they might take it a bit more serious??

Link to comment
Share on other sites
LyndaLou Newbie

Thanks for the replies. I'm sending an email to the student affairs dean. She's been very responsive in the past, and I expect a phone call from her tomorrow. Katherine is just so tired of fighting it. She's getting frustrated, and is ready to just fend for herself.

I understand. I've not been through the testing, but I either have celiac myself, or am very gluten intolerant. I know how I feel when my food is coming to me through other hands. Especially if I feel that the other hands either don't know or don't care about my issues. I cannot imagine if every meal was dependent on others.

This is just the beginning, I know, because next year she goes off to college!

Link to comment
Share on other sites
domesticactivist Collaborator

I know they are supposed to accommodate but the reality is that is a tall order even if they are well educated and willing, which it sound like they are not.

I have two ideas.

The first one is to send the food yourself. This is what we do when the kids go to overnight camps. Everything is labeled with the day and meal or snack it is for. It's kept in the walk in and staff are instructed on how to safely handle it. We get permission for our kids to handle their own food when possible. Depending on her level of sensitivity, you may be able to identify some foods the cafeteria provides such as raw fruits and veggies that your daughter can have access to wash herself and eat when necessary.

It would be a weekly trek, or maybe with frozen home cooked meals you could stretch it out longer.

Another thing is that she could get permission to do her own cooking. She could use a mini fridge, hot plate, crock pot, cutting board and pan. A toaster oven would be great but maybe too much of a fire hazard. I'm not sure what the time and logistics around getting food would be. Maybe her own grocery list could be added to the regular kitchen list and kept separate.

Link to comment
Share on other sites
sariesue Explorer

I know they are supposed to accommodate but the reality is that is a tall order even if they are well educated and willing, which it sound like they are not.

I have two ideas.

The first one is to send the food yourself. This is what we do when the kids go to overnight camps. Everything is labeled with the day and meal or snack it is for. It's kept in the walk in and staff are instructed on how to safely handle it. We get permission for our kids to handle their own food when possible. Depending on her level of sensitivity, you may be able to identify some foods the cafeteria provides such as raw fruits and veggies that your daughter can have access to wash herself and eat when necessary.

It would be a weekly trek, or maybe with frozen home cooked meals you could stretch it out longer.

Another thing is that she could get permission to do her own cooking. She could use a mini fridge, hot plate, crock pot, cutting board and pan. A toaster oven would be great but maybe too much of a fire hazard. I'm not sure what the time and logistics around getting food would be. Maybe her own grocery list could be added to the regular kitchen list and kept separate.

While sending in food works for short term things like camp, it may be much more difficult in a dorm setting at a University. For one they may not have the room to store all of the extra food. I've seen University cafeteria walk ins and they are packed. There there is the matter of having it heated by the staff..Plus it could be a huge inconvenience for the family and the the student. Many residential schools have activities on the weekends that she would have to miss to go home. And it's asking her parents to drive 12 hrs in one weekend every weekend. The cost for gas would be huge. So this might be a good last ditch effort to keep her in the school. Have you discussed what is done for the University students who have food allergies or celiac? they might have a special cafeteria or special arrangement that can be applied for your daughter.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



domesticactivist Collaborator

I realize the ideas I proposed are inconvenient. A week of food would require 6 hours driving, not 12 - still a big sacrifice. Walk ins are crowded but shed have to have food there one way or the other - or could be given a fridge in her room or community area. Another thought is she could do her own once a week cooking in a community or church kitchen. If she has access to transportation she could do her own shopping.

It sounded to me like the family had already been assured the kitchen would feed her safely and they had proven unable to do so. I wouldn't want to rely on the apathetic staff to protect my health in that situation. Of course it's a hassle to shop and cook or send food, IMO that's way better than being sick.

Link to comment
Share on other sites
kareng Grand Master

There's always removing her from a dangerous enviroment.

Not a popular option, I'm sure.

Link to comment
Share on other sites
LyndaLou Newbie

Hey everyone! I've been at work all day, with no internet access, so I'm just now getting caught up.

The school's student affairs director and the school director met with the head of food services today and they came up with a better plan for Katherine.

They will have a plate ready for her at 11:00 each day and are meeting with the staff to further educate them about gluten and how to avoid cross contamination.

They are also going to move the bread products to the end of the line to try to avoid having the bread fall into the veggies (yes, she's seen it happen!).

They honestly seem to be trying to make this work. They immediately act upon any concerns I have, and hopefully it will get better, at least for a while.

Thanks everyone for your ideas and input. As I said before, this is a learning experience for everyone involved. Including the university. It's small, and Katherine

is the only student on campus(college or high school) on a gluten free diet. Maybe this will make someone's journey easier down the road!

Link to comment
Share on other sites
sariesue Explorer

I realize the ideas I proposed are inconvenient. A week of food would require 6 hours driving, not 12 - still a big sacrifice. Walk ins are crowded but shed have to have food there one way or the other - or could be given a fridge in her room or community area. Another thought is she could do her own once a week cooking in a community or church kitchen. If she has access to transportation she could do her own shopping.

It sounded to me like the family had already been assured the kitchen would feed her safely and they had proven unable to do so. I wouldn't want to rely on the apathetic staff to protect my health in that situation. Of course it's a hassle to shop and cook or send food, IMO that's way better than being sick.

I was working under the assumption that she would go home for the weekend.Since she is at an age where she may want input in the menu and it would be a great time to teach her how to cook gluten free.

Link to comment
Share on other sites
Di2011 Enthusiast

They honestly seem to be trying to make this work. They immediately act upon any concerns I have, and hopefully it will get better, at least for a while.

Thanks everyone for your ideas and input. As I said before, this is a learning experience for everyone involved. Including the university. It's small, and Katherine

is the only student on campus(college or high school) on a gluten free diet. Maybe this will make someone's journey easier down the road!

Yeehaa! Go LyndaLou. I wish lots of good karma on all those people helping you out. :D

Make sure you keep in mind staff turnover at the kitchen. New staff next term/semester/week who don't understand what you've managed to put in place today. Make sure your daughter is aware of this too. She should keep an eye on who is who and who is new at the kitchen.

And I will hope your clever daughter goes to med school and becomes a brilliant celiac/gluten/food intolerance expert. Nobel prize ?!

Link to comment
Share on other sites
LyndaLou Newbie

Make sure you keep in mind staff turnover at the kitchen. New staff next term/semester/week who don't understand what you've managed to put in place today. Make sure your daughter is aware of this too. She should keep an eye on who is who and who is new at the kitchen.

And I will hope your clever daughter goes to med school and becomes a brilliant celiac/gluten/food intolerance expert. Nobel prize ?!

Good idea about the staff turnover. Katherine has already started to keep a diary/log of what happens, etc. If we have to revisit this (and I'm sure we will) she'll have actual data to back up her concerns.

I keep telling her she needs to do "x" (with x being whatever celiac related thing we need at the moment!). She does want to go into product design/industrial design, so maybe something will come of it.

Thanks again for the encouragement!

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    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

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...