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13 Comments

  1. 1

    Sarah

    To those dealing with the teacher and nutritionist who don’t understand or believe false things about celiac disease, have you thought about pulling brochures or reliable information from the internet and printing (where applicable) and leaving it where they can see it, like their desks? Perhaps you can sneak it there during a free period or something? I’m an introvert as well and hate confronting people, but perhaps doing something like this can help get the point across. Good luck.

    Reply
  2. 2

    Julie

    For young person #2, if you can get your parents’ support, I think it is important to go to the principal this teacher giving false information. If any of the rest of us did our jobs poorly, our supervisors would hear about it. So I think the same should apply to this so-called nutrition teacher.
    And to all of you, hang in there! It’s encouraging that each of you understands the risks of not being 100% GF, so if you’re not getting support from those directly around you, you also have your Celiac community (like us!) I also found Gluten Free Meetup groups to be helpful too, although I’m not sure if they have ones geared toward adolescents. Finding someone that can empathize since they’ve been through it is the best way to feel heard and understood. Good luck to all. <3

    Reply
    1. 2.1

      Ann

      I am #2’s mom. I emailed teacher with facts and her response was ugly. She called me brainless and stupid (she’s a peach of a person).

      I am a science teacher, so I attempted to approach this teacher with facts and asking her to fix the misconceptions she created. Once the verbal abuse began, I forwarded the entire conversation to the principal but have not heard back from him.

      Our daughter has our full support and I am proud of how she has stood up for herself.

      Reply
      1. 2.1.1

        Rosie’s Mom

        As a Celiac and a parent of a Celiac, I have heard all kinds of terrible things from the teachers and even one Principal. I highly recommend a 504 for your child. Celiac disease meets the classification of a disability. The 504 needs to state there shall be no teaching with food as part of lessons. You need advanced notice parties, etc. Shocking how often the teachers in our area teach or reward with food in math, English, sciences, languages, etc. The substitutes need to be aware. Classes that teach or discuss digestive related topics shall distribute information about Celiac disease from reputable sites such as …(mine are bookmarked …glutendude. I think Chicago University has a Celiac research site. Etc)

        We have also found the best support within the school comes from the counselors and the nurses. They may or may not have power to change, but they do have an ability to talk to staff to educate them. For next year the counselors can place your child with teachers that are the most willing to be helpful.

        Also, no matter how quiet or introverted your child is at school, a shocking number of kids will know and care that food hurts her. It takes a while to clean up the bad info from the health teacher, but continue to state facts and where kids can look it up. Send her to school with the junk foods kids love that are stamped gluten free. It helps to show she can eat normal food, just specific brands. (Hershey kisses for Valentines Day.) Pretty soon your daughter will find other kids asking intelligent questions or even correcting teachers.

        Reply
  3. 3

    Dee Horowitz

    My wish is to find a community of 55+ where they get it! So many of my so called friends have stopped inviting me to events, parties, dinners because of Celiac Disease. I found one such community near Baltimore but would prefer California, NJ or Florida. Any ideas, Dude?

    Reply
    1. 3.1

      pippy longstocking

      Dee,
      Go to Forums, at the top of the page. A page will fall down where you can choose what you are looking for.

      Reply
  4. 4

    Elizabeth

    I would suggest going to your school librarian to request books on celiac. Jennifer Esposito and Gluten Dude’s books are excellent sources and there are others, These books can be shared with family, friends, the misinformed teacher.
    Be patient, we are trying to educate people who are uninformed or misinformed. You can lead the way. Good luck.

    Reply
  5. 5

    Joyful

    To all three of you.. bless you.. and know while the people in your lives might not support you.. we will.

    It has taken years for my children and I to be taken seriously. . (Hell I’ve written in tears to the gluten dude a few times..)

    The good news is that if you keep strong.. you keep committed and never ever cheat… eventually everyone will come around.

    Print out the info sheets on this site. Do your own research. I hand out a few pages to teachers at the start of each year..

    Perhaps this can wirk for parents to. Or just get super practical and organised and create your own safe space somewhere in the house..

    You will never win over everyone. . But if you live your trith with all your might.. people will learn to respect you.. Remember it is your life..

    As i read this i felt so moved.. this time last year my son was enduring some boys shoving sandwiches in his mouth.. to prove gluten is ok.. while teachers laughed… today i just dropped him off at his first sleepover.. where all the kids were waiting on door step with the trill of a successful hunt on their faces.. they had made a gluten free sleep over…

    Be strong.. be safe.. we have your backs if needed. Much love to you all.

    Reply
  6. 6

    Bernie

    Sorry but I am unable to comprehend how stupid & ignorant that some non coeliacs (pardon the spelling – but I am in Australia) can be. As if coeliacs go about checking their food ingredients FOR FUN !!! – I’ll gladly pass on this FUN to any non coeliac / any one who thinks that gluten avoidance is a fad &/or something that you will grow out of. Perhaps if one had a REAL disease eg Cancer, then maybe people might be more understanding & accommodating ? ( For the record – coeliac disease can be a cancer causing exponent). My comments on the above :
    – Young Person # 1 : Its a great pity that your parents are so non understanding about your condition as I assume that you are a result of their union -” it’s in the genes”. Maybe they will be more understanding if in later life they are diagnosed as coeliacs – it happens – I was diagnosed at age 60.
    – Young Person # 2 : Your school nutritionist is a disgrace – where did she get her qualifications ? Walmart ?? Bombard her with information from your GP / US Coeliac Society ?”
    – Young Person # 3 : You are in charge of your own body, stay 100% gluten free. If others want to cheat that’s their problem. It ain’t easy but stay true for your own well being. Stay Strong.

    Reply
  7. 7

    Rosie’s Mom

    For those with unhelpful schools, check out Gluten Intolerance Group (GIG) great printable resources for schools and family.

    To the 17 year old with an unsupportive family, sometimes family can be really annoying and difficult and everything else, but that is your family by blood. You are so close to graduating high school and moving on with your life. Focus on school and on the positives, if possible, get a job so you can financially support yourself. As you get just a little older you will find some amazingly supportive friends that will be the supportive “family” you need.
    I have spent many years picking up my family at the airport and throwing out the gluten and allergen loaded snacks that are not allowed in my car or home. Eventually they stopped leaving the airport with unsafe food and finally they started asking what would be a safe treat they could bring.

    Reply
  8. 8

    Cali Celiac

    Awesome Rosie’s Mom, I may adopt your strategy and just confiscate non-GF food before letting people into my GF home. Maybe after a few times they will get “it”.

    My son was diagnosed with ADD and also has a rare bone disease (Fibrous Dysplasia) and we had a lot of trouble with his 6th grade teachers until we put a 504 in place. Unfortunately, some teachers think that the teaching credential makes them an expert on everybody else’s children. After putting the 504 in place we were able to finally force the teachers to modify some of their behaviors towards our child and he went from struggling to pass the grade to all A’s and B’s. Don’t be afraid to assert your rights as a parent and the additional rights a 504 can empower you with.

    Reply
  9. 9

    W. M.

    I am so sorry to hear how your daughter was treated. I am a high school English teacher, and my whole department has watched me deal with so many food issues that they are now super-protective of me (“No, no — Wendy can’t eat that!”). The one person who “just doesn’t get it”, ironically, is our Cafeteria Manager. (She thinks I’m a vegan — doesn’t matter how many times I explain it — so now I just smile and nod.)

    The other group of people who “get it” are, no surprise, my students. Many of them have food restrictions and allergies, so when some event comes up at school where teachers give out treats, I make sure to have something special for them. I don’t make too big a deal about my situation, but I’ve found by sharing the basics with my classes, other kids and teachers feel like they can be “out” about their diet restrictions, too.

    Really — how different are we from people who have to keep kosher or halal? Why is it that religious dietary rules are respected, while ones that have to do with our health are not? Strange.

    Reply
  10. 10

    GF Canada

    To all 3 of you. Don’t give up. Print out some info and spread the love. #1 Once a week put some info around your place. In the mailbox, dryer, microwave, dishwasher. Your parents won’t like that but maybe they will get the message. If they ask, tell them it must of been the celiac fairy :) #2 For your nutritionist, same thing. Put a gluten parking ticket (celiac info) on their vehicle every Friday. Go to their place at midnight and stick one in the mailbox. You will probably take some heat for it and when they ask, tell them they don’t understand. #3 Don’t listen to your friend’s Dad. His cheating day will catch up to him. When he gets sick down the road, you will know why and be smarter for it. I changed school in Grade 5 and the stress of new students and teachers triggered my celiac. In 1993 I was getting much worse. No doctor for years and years could tell me what was wrong. I’m glad that all of you got diagnosed early and don’t have to go thru hell forever with health problems. When you have time, this morning on the facebook Canadian Celiac Association’s page, a man from Australia had a great post about celiac. Look for Dawn Swift’s post about it. It has great info for you all and knowledge is power. Good luck and go buy some more printer cartridges. Peace and love from Canada

    Reply

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