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The Kids are Back in School - Tips for Making the (Gluten-Free) Grade by Danna Korn

If you have a lot of tension and you get a headache, do what it says on the aspirin bottle: Take two aspirin and Keep away from children.

The transition from summer to back-to-school is paradoxical. On one hand, summer means sleeping in, adventuresome vacations, evenings free of homework and obligatory assignments, and a chance for parents to take pleasure in their kids carefree, relaxed summer schedule (or lack thereof). On the other hand, mantras like, Im bored, Are we there yet? Theres nothing to do here, and the non-stop sibling bickering that seems to escalate when one child dares to breathe the same air as another has some parents singing, Its the most wonderful time of the year a good four months before Christmas.


But its not always the most wonderful time of the year. For parents whose children cant eat gluten, sending kids to school can create an entirely new dimension of anxiety that extend far beyond the typical back-to-school blues: What will he eat for lunch? What if there are birthday parties and my child cant participate? Will kids make fun of him? Will the teacher take time to understand his condition? What if he eats the Play Doh? How can I make this easier for him?

This is harder on you than it is on your child

If your child is newly diagnosed with celiac disease, or is new to the gluten-free diet, I know youre thinking, Oh, no its not! She just doesnt understand how hard this is. When I speak at conferences and tell parents this is harder on them than it is on their kids, I inevitably have one or two - always the parents of newly diagnosed celiac kids - who respectfully (and usually temperamentally) disagree. They tell me I dont understand.

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Believe me, I do understand. But also believe me that this is harder on you than it is your child. Its harder, because of the very nature of being a parent. We love our kids so intensely that every pain they experience hurts us ten times more. Nothing breaks our hearts more than to know that our children may experience heartache. But remember, one of our most important jobs as parents is to teach our children how to deal with unpleasant experiences and emotions. As Anne Bronte said, If you would have your son to walk honorably through the world, you must not attempt to clear the stones from his path, but teach him to walk firmly over them.

Tips to make it easier

  • Give your child control of his diet.
    Yep, even if hes just two years old. Anyone who has heard me speak or has read either of my books knows that Im an absolute nag about telling you to give your child control of his diet, because if he doesnt control his diet, his diet will control him.
  • Educate your teachers and principal.
    Set a meeting with your childs teacher(s) and principal to explain your childs condition and diet. The best time to do this is a day or two before school starts for the year. The teachers are usually at school setting up their classrooms, but theyre not yet distracted with new students, parents, and classroom responsibilities. Provide the teachers, principal, and the school nurse, if you have one, with clear, concise written materials explaining celiac disease and your childs diet. Some people find it helpful to give the book Kids with Celiac Disease to the school, so that the nurse, teachers, and principal can more thoroughly understand the condition and diet. Make sure they understand the severity of accidental gluten ingestion. Remind them that they should contact you if there are any questions, rather than taking a chance.
  • Lunches: use good judgment.
    Most of the time, the people in charge of preparing food for children in a preschool or school setting are already used to dealing with lactose intolerance, peanut allergies, and other dietary restrictions. Talk to the dietitian or person in charge of food preparation. Go over the menu plans, discuss the foods your child can and cant have, and talk about the importance of using clean utensils to avoid cross-contamination. If you feel comfortable with the persons understanding and acceptance of the diet, give them the opportunity to accommodate your childs special diet. You always have the option of sending in your own meals if you think its not working out. If you are interested in your childs legal rights to reduced-cost school lunches, see Kids with Celiac Disease under Section 504.
  • Talk to the adult lunchtime supervisors.
    Kids will swap food. Its an age-old tradition, and its not likely to stop with your child. Aside from the likelihood of getting gluten, your child may end up hungry. Sometimes your childs goodies are better than the other childs, and it makes your child so proud that shell gladly give them all away, to be left with nothing. So the best you can do is explain to your child why she cant trade food with her buddies, and make sure the lunch area monitors are keeping an eye out for swappers.
  • Out of snack and lunch ideas? See Kids with Celiac Disease.
    Its loaded with snack and menu ideas, many of which travel well in lunch boxes and bags.
  • Give the teacher a stash of gluten-free treats.
    A large bag of Halloween-sized individually wrapped candies works well, and because theyre individually wrapped, the teacher can keep them in a cupboard without the threat of ant invasions. Let the teacher know that these treats are to be used any time there is a special event during which treats will be served. Make sure the treats are your childs favorite; you dont want him feeling like hes being short-changed.
  • Get a schedule of classmates birthdays and scheduled holiday parties.
    Teachers are glad to provide you with a listing of everyones birthdays. This way you know in advance when there will be parties. You can coordinate with the other childs parent, or send your child in with her own cupcake or treat. If theres a surprise event, your child always has the stash of candy youve given the teacher.
  • On your childs birthday, bring a popular gluten-free treat for the entire class.
    Its best not to risk celebrating your childs birthday with gluten-free cupcakes. Its possible that everyone in your childs class might like your homemade gluten-free cupcakes. On the other hand, there may be one kid who, for whatever reason, takes one bite and spits it across the classroom, declaring, What IS this stuff? You can bet your child wont forget that incident for a very long time. Its best not to risk it. Instead, bring in ice cream bars or ice cream sundaes. Or, if you cant do frozen foods, bring cutely decorated candy bars or goodie bags filled with candy (brands that everyone knows). It will bring your child immense pleasure to share treats with the class that she can eat too (and kids like that stuff better than cupcakes anyway!). Of course, you will want to be sensitive to any of your childs classmates who might have peanut or other allergies, and choose treats that everyone in the class can enjoy.
  • Ask for liberal restroom privileges.
    Many teachers restrict the number of times children are allowed to go to the restroom, or they ask children to wait until a more appropriate, less disruptive time. Let the teacher know that your childs condition may require a hasty trip to the restroom, and that he should under no circumstances be restricted from going. You may even want to establish a little code between your child and her teacher, so that he can inconspicuously dismiss himself. Its a little less embarrassing than having to ask.
  • Consider talking to the parents at the parents-only back-to-school night.
    Most schools have a back-to-school night for parents only. This is a great time to talk to the other parents about your childs condition and diet. Not only will you be helping them to understand and accommodate your childs diet, but you will be educating dozens more people about celiac disease - something we should all be doing on a regular basis.

Dont be mad when people dont accommodate your childs diet.

Its going to happen. Someone will have surprise treats for the class that your child cant eat, and the teachers secret stash will be empty. Or someone will decide its baking day, and your child will be the only one not sampling the goods. Dont be annoyed, offended, or angry. These people arent intentionally trying to leave your child out, nor are they being insensitive. They simply forget sometimes!

Most importantly, remember that your child is learning from your reactions. He will be in situations like this for the rest of his life - teach him to be gracious, politely declining the treats offered to him, and to accept the fact that this is just one of those little stones in his path of life that hell need to learn to step over...with a smile and the knowledge that people generally mean well.

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2 Responses:

 
Sherrill
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said this on
22 Sep 2010 8:34:38 PM PDT
Very helpful---my 8 year old doctor's teacher called me today and requested information on celiac disease---very impressed--off to a great start!!

 
Claire
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said this on
13 Feb 2012 4:11:53 AM PDT
Thanks so much for the useful tips. My 21 month old child has just been diagnosed and this website gives me hope!




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Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.). The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.

I'm sorry that life is so hard right now. Really. I can't imagine working 3 jobs and trying to manage this terrible illness. I think about American society and their obsession with food often. Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies. A loaf of gluten-free bread will last me 4-6 months in the freezer. I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty. I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated. Good luck!

Hi! Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too. Gall bladder problems are often associated with Celiac Disease. Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....

That's what I thought! My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that. He never had the biopsy either. I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all. My doctor didn't even offer the biopsy, and said the blood work was enough. Should I seek a third opinion? I mean, I've been gluten free for 9 months...

It will prolong your life....celiac is a autoimmune disease that causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS. I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/