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Gluten-Free Menus in School: A Worthwhile Food Fight

Celiac.com 10/29/2008 - Equality.  That’s all any parent wants for his or her child.  In this case I’m talking about food at school.  Are you completely frustrated that you can’t get a gluten-free lunch for your child at school?   According to a recent survey by the American Celiac Disease Alliance, many parents of celiac children may feel the same way.  The survey conducted during the summer of 2008, found of 2,200 respondents, 90% had to regularly pack gluten-free lunches for their celiac child. I used to be one of them and was stuck feeling like I was banging my head against a wall trying to get a few hot lunches for my child.  That goal of equality saw me through a journey — years in the making — that would eventually pay off.

Just before my celiac daughter’s kindergarten year began, I thought I covered all my bases.  I talked to the school nurse, Emma’s teacher, and the head of the cafeteria about her condition and her diet.  I found there was very little she could have at school except beef tacos, which she loved.  Eventually that one menu item, which made my daughter feel just like the rest of the kids, vanished; a near tragedy for her, sheer frustration for me.  I would ask myself “Why do the schools have to serve up so much food with gluten?” I also didn’t feel like I was taken seriously by the cafeteria employees.  I housed some small gluten-free food items in the freezer at school in case of emergency.  That expensive food was thrown away, with no one even realizing they did it.  That told me, they weren’t paying attention.  And I was done.  It seemed as though Emma was destined for cold lunches until she graduated from high school.  

Honestly, school lunches may not be the perfect meals for our children, but suddenly many parents feel an urgency to feed them school food when their celiac child starts to feel left out.

The good news is: times may be changing.  Sherri Knutson, Student Nutrition Services Coordinator for the Rochester, Minnesota School District, and her staff have developed a monthly gluten-free, menu for students.   “We’re making it come together…to meet the needs of the student,” Knutson said.  It is more like students!  As many as 20 children every day order from this menu which actually mirrors the “regular” monthly menu, including gluten-free chicken nuggets, spaghetti and hamburgers WITH a bun.  Knutson says they started slow in 2004, offering only a few gluten-free options each week and then expanded from there.

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Offering the menu comes at a cost – to the district.  Officials with the US Department of Agriculture (USDA), which oversees the school lunch program, say schools cannot charge parents more for specialized, expensive diets.  A regular school lunch in that district costs $2.05, but the gluten-free lunch costs about double.  Knutson’s district essentially “eats” the cost.  “Cost is not one of the factors that should impact [implementing this diet in schools].”  But she admits they look into finding ways to cut costs, like baking their own gluten-free goodies.

Now word is spreading about this groundbreaking menu.  Knutson says she is getting calls from school districts across the country asking her how she does it.  Her answer is simple, start small and do what you can.  She also asks parents to be understanding and patient; accommodating the gluten-free diet is very new for most school districts. 

My conversation with Knutson was enlightening and empowering, but back at home I was struggling with my own district.  There were times in the last four years, where I wondered if the district even cared about my daughter’s health and nutrition needs.  After months of many unanswered emails and phone calls with my district nutrition department in late 2007 and early 2008, I finally called my school board member to get some attention.  That one phone call got the ball rolling.  In the six months since, I have had several meetings with key employees in the district and school.  My district also appointed a coordinator for specialized diets who works directly with schools that have special food requirements for certain students.  In October of 2008, I saw a first draft if it’s two-week, gluten-free menu.  The nutritionist I work with tells me it is just the beginning.  I am so pleased and proud of them for finally taking some much-needed action.

It is amazing how far you can come with a lot of work, tenacity and passion for equality.  If you are in the same situation that I was, I urge you to take action.  If your school cook won’t help you, go to the district nutrition director, if they won’t help you go to the superintendent, if they won’t help you go to the school board, and if they won’t help you, contact the education department in your state.  That group may oversee statewide compliance of USDA rules.  I was able to get this done without a 504 plan for my child.  Simply put, a 504 plan is detailed paperwork which gets you the needed accommodations for your child and their diet.  You may need to create a 504 plan to push along the lunch changes for your child.  Watch for much more on this important issue in upcoming posts.

I cannot guarantee you will get drastic changes in lunch offerings from your district, so if you are still in a slump, check out the American Celiac Disease Alliance.  Serving specialized diets in school is a hot topic right now and the ACDA is trying to advocate for all of us.  Your child has a right to eat school food.  And this is one food fight – worth getting in on!

*For much more information on the Rochester, MN School District’s Gluten Free menu, see this article I wrote for FoodService Director Magazine in September 2008.

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9 Responses:

 
Jeff
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said this on
03 Nov 2008 7:04:30 AM PDT
Excellent article. I assume that any other food allergy would be handled the same as a gluten intolerance.

 
Pam Shepard
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said this on
03 Nov 2008 4:02:34 PM PDT
The 504 plan makes life much easier. Mary has been very lucky. She has had gluten free lunches since she started in Head Start at age 3 and was diagnosed with celiac disease at the age of 3 1/2. For any child in the public school system a 504 plan is the way to go. She is in the 8th grade now and the family living course has been a challenge as it involves cooking. Unfortunately for her she is the one breaking the way in her school district. Now if I could just convince the school district to change the form they use for the 504 plans. Theirs is all on disruptive behaviors not a thing on it about food allergies or malabsorption problems. They were not happy when I insisted on certain things being placed on her plan and adding an extra page to it that I had done on our home computer. This is also an issue that needs to be addressed from the federal level to the state level and then to the local level. Thank you for letting me vent about 504 plans in the state of Pennsylvania.

 
Barb
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said this on
03 Nov 2008 5:17:15 PM PDT
This article expands upon a serious problem. In our school district we couldn't even get an answer about ingredients in the tater tots! I am looking for support and ways to tackle this same issue!

 
Sue
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said this on
04 Nov 2008 1:16:26 PM PDT
I found this article to be very interesting, but honestly, with the concerns of cross-contamination, I wouldn't trust the school cafeteria to be as careful as they need to be. I work in a school system and am familiar with the cafeteria process - their main concern is herding a large number of kids through every day. I can't see them being able to keep everything separate that needs to be, using separate grills, utensils, etc. Besides that, the quality of food offered in the school system is questionable to begin with. My daughter has packed her lunch to school every day since she was diagnosed, and often she tells me that the kids would rather have what she's having! Yes it can be a pain, but I don't think I'd take the risk of her getting gluten in her food just for the sake of convenience.

 
Jean
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said this on
04 Nov 2008 3:33:53 PM PDT
Nice idea, however, school lunches are not usually very nutritious. Chicken nuggets? Pasta? Hamburger buns? It seems it would benefit all children's health more if the emphasis were placed on improved nutrition of food, which naturally leads to less gluten. That, however, if where the cost really goes up! Fresh food is expensive, especially when so much of it would be thrown away by wasteful picky kids! The bag lunch option looks pretty good to me! How can we use our energy instead to get mandatory testing of kids here in the USA, like they do in Italy, so more kids are properly diagnosed, leaving our gluten intolerant kids not feeling so 'left out' with a bag lunch? LOTS of the kids in the lunchroom can't eat it - despite their ignorance. This frustrates me more than being excluded from the poor quality lunch offerings.

 
Janet
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said this on
04 Nov 2008 5:21:28 PM PDT
I've always packed my sons lunch, but interesting to think of fighting for him to have access to food at school. Thanks!

 
Alexandra Isom
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said this on
22 Sep 2009 2:59:18 PM PDT
Wow!! this is really ironic as I just tried an idea out on my school about a gluten free lunch once a month just to see how it goes. I was diagnosed in march 2009 and I will be 16 on september 30th, and you know the craziness of being a girl plus worrying about this disease is hectic. The only people I know personally so far with celiac is a sub teacher in our school and a psychologist at my school. An adult told me about her and I talked to her she gave me great tips! Anyway I wrote a proposal and talked to my principal and then he took me to the head of our school lunches. His son actually had celiac wen he was real little but grew and changed and got out of it! She said the problem with this is she has to order food at month supply at a time which made me sort of sad.. just because of that may be the reason it may or wont happen.. but she told me I could store stuff in the fridge with a date and name on it but like what happened to you I'm scared they won't care or will forget and just throw it away. Even if I'm in 10th grade I still feel left out sometimes with this whole shabang! but I hope they get the word out about school lunches and a gluten free menu. I'm definitely showing this article to some of the staff at my school!! Thank you for posting this.

 
admin
( Author)
said this on
24 Sep 2009 10:53:58 AM PDT
FYI: You can't grow out of celiac disease, so you may want to let your principal know that his son likely still has it, even if he doesn't have symptoms (unless the original diagnosis was wrong).

 
Alexandra
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said this on
07 Nov 2013 5:03:56 PM PDT
I thought my school was accommodating my son's needs until I found out this morning that he was served Lucky Charms for breakfast. Lucky Charms are made with oats, which are highly cross-contaminated with gluten. I called them about it, and they still seem to think Lucky Charms are gluten-free, so back to making lunches and breakfasts.




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^^^^^^ good info, tips and tricks^^^^^^^^^ yes, crumbs will make you sick. also, breathing flour/pancake mix, etc that is in the air because eventually, you're going to swallow some.

Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement. Hang in there.

Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks ???

I can completely relate! The horrible mental effects that I have been living with for years is the absolute worst side effect of eating gluten, HANDS DOWN. Worse than the endless tummy aches, worse than the constant diarrhea, worse than the week long migraines, worse than the daily fatigue and body pain.... I honestly though there was something seriously wrong with me and hated my life because of how I felt mentally. I always felt like I was drowning, not in control of my thoughts, trapped in some unexplained misery. My head was always so cloudy, and I was mad because I always felt so slow and stupid. I would feel so lethargic and sad and empty while at the same time be raging inside, wanting to rip out of my own skin. I was mean, terrible, would snap at the people closest to me for no good reason and just felt like I hated everyone and everything. Think of how crappy you feel when you have a terrible cold and flu - I felt that crappy, but mentally. Some days were really bad, some were mild. I always thought it was because I was getting a migraine, or because I had a migraine, or because I had just overcome a migraine, because I didn't sleep well, because....always a random reason to justify why we have all these weird unrelated symptoms before we get diagnosed. I'm happy to say that I have been gluten-free for about 2 months now and though I am not symptom free, the first thing that improved was my mood. I no longer feel foggy and miserable. For the first time in years, my head is clear, I can actually think, and I feel positive and like I am in control of what's going on in my head. I don't hate the world. I don't spend every day bawled up on the corner of the couch depressed and angry. The release of these horrible symptoms is enough to never make me want to cheat, no matter what I have to miss out on. So insane how a little minuscule amount of a stupid protein can wreck such havoc.

I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use! Matt --- Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI: Presentation slides from Dr Volta's visit to Coeliac UK - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children: NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo