Mailbag: 3 Young Celiacs Disease Need Some Advice

children with celiac disease

Hey everyone. Happy Friday. I took about an hour this morning responding to as many of your emails as possible. Yeah…I’m ridiculously backlogged. I can’t respond to every email but I do indeed read them all. It’s absolutely eye-opening how this disease affects us all so differently; physically, mentally and socially.

Today…I thought I’d do a bit of a theme. Three young celiacs reached out to me recently asking for advice on what they are experiencing. And who better to offer advice than this wonderful community. Except for the person that called me Gluten Douche…no need to pipe in here. (That name still cracks me up.)

Anyway…here are the three emails. Any help and guidance you can offer would be much appreciated.

Subject: Family does not take celiac seriously.
Hi Gluten Dude. I am a 17 and I live with my parents who do not support me with my celiac. They buy the celiac safe foods but do not support me emotionally or in any other way. They tell me i’m overreacting and say that they do not care when i get cross contaminated or anything because apparently it is my fault. I don’t have any support from anyone else either other then maybe one friend that i never can even see because my parents won’t allow contact in person because he is male. Can you please help me? i do not know how to make them understand or anyone else understand.

Dude response: While I don’t understand why so many people don’t take our disease seriously (maybe I should ask Party City), I will NEVER understand why a parent wouldn’t take it seriously. And I get these kinds of emails a lot. Makes me so sad and so frustrated. Ok…first off. IT IS NOT YOUR FAULT. Please take the blame off yourself. Your parents have no right to treat you like this. In this day and age, with the world of information at our fingertips, there is simply no justification in claiming ignorance anymore. If your parents don’t understand and aren’t supportive of your celiac disease, it’s on them. NOT YOU. How do you make people understand? I’d like to say “education” is the answer but I know it’s tough to educate ignorant people. Send them to celiac websites that you trust. Talk about how untreated celiac can lead to a number of other serious health issues. And if they still refuse to support you? You have some decisions to make. Hang tough.

Subject: School nutritionist lies about celiac disease.
Dear Gluten Dude. I was diagnosed with celiac when I was 12, I’m now 17. I would also like to ask your advise on something. I go to a rather small school where everybody knows everybody, and because of this everyone knows of my celiac disease, seeing as I’m the only one in the school who has it. I recently found out that our nutrition teacher has been teaching her students about celiac, but the information she gives them is incredibly false. She’s has said that celiac disease is reversible, and the only reason doctors don’t tell us that there is a cure is because they want to keep shoving drugs down our throat. Because of this people take me as serious as they used to, and try to tell me that all I have to do is change my diet and I’ll grow out of it. I really want to go to the teacher and inform her how wrong she is, but she honestly scares the living daylights out of my introverted self. Please help me figure out what to do.

Dude response: I know in this day and age, it seems like facts don’t matter. But they do matter. So let’s talk facts. So Fact #1: Celiac disease is not reversible. It’s with us for life. There is NO CURE. And there is only ONE treatment: a 100% gluten-free diet for LIFE. Fact #2: There is no drug to treat celiac disease. And that may be why the medical community is still so ignorant about it. There is no financial motivation for them. That is the sad world we live in. Fact #3: Your nutrition teacher sucks. If you don’t feel comfortable talking to your teacher (and believe me, I was there at your age too), what about your parents? Someone has to come to bat for you. If not, you’ll need to speak up on your own. Not easy, but you can do it!!

Subject: Nobody understand what celiac disease is like.
Hi Gluten Dude. I️ am 12 years old and two months ago I was diagnosed with celiac disease. I️ don’t have any friends with this and the girls in my friend group don’t understand i️t at all and it really annoys me. I️ asked my teacher a question about the digestive system, casually mentioning I️ had celiac. The teacher did some research about celiac because the question I️ had asked could only be answered if you knew what it was. The next day he said he had done some research on celiac. He then started explaining to me that people with celiac can’t have gluten and he was saying stuff like “I️ don’t know how much you don’t eat gluten.” I️ know that’s not very clear, but he acted like it was no big deal and I️ didn’t know what it was, and I️ felt stupid for asking a question about I️t.

I️t hit me then that people just don’t understand what it’s like. Also, my friend’s dad tries to talk to me about it because he is also gluten and dairy free (I️ didn’t mention but I️ am dairy free too), but it really annoys me because he does not take the diet seriously at all. He has cheating days once a week, that is so different from my 100% gluten free diet I️ have to follow. Every food I️ eat I️ look up to make sure I️t doesn’t have gluten, everywhere I️ go I️ need to make sure my food isn’t contaminated (as I️’m sure you do and can relate). It’s hard watching celebrities say things like “I️ feel so good without gluten and I️ am so much skinnier” and friends saying “oh just don’t eat gluten it’s ok,” because no it’s not ok. I️’m sorry for this long rant!!! I️’m hoping you can relate to this. I️t would mean so much to me if you responded to this with some advice. I️ feel like no one understands what it’s like. Thank you so much for taking the time to read this.

Dude response: Don’t ever feel stupid about your disease. It seems to me you’re pretty darn smart. Please don’t take ANY advice from someone who cheats on their gluten-free diet. They are not to be trusted. And believe me, I know how much the celebrities hurt our cause. Heck, I even wrote a personal plea to Kim Kardashian to knock it off. One of my favorite sayings is “You cannot control what other people say or think. You can only control your reaction to it.” I know easier said than done. Stay strong!

To all three of you awesome people, I have a forum where you can connect with people your own age. Perhaps that can help. Check it out.

Ok…that’s all I got. Can anyone else chime in?

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14 thoughts on “Mailbag: 3 Young Celiacs Disease Need Some Advice”

  1. 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.

  2. 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

    1. 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.

      1. 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.

  3. 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?

    1. pippy longstocking

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

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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

  11. Update. I always forget our Canadian celiac facebook group is closed to the public. This will help all 3 of you. Search CCA celiac disease. This is the national celiac website for Canada. Hover over “Living Gluten-Free.” At the bottom, you’ll see Myths & Facts. There are 12. I wish every celiac reads this and everyone in the world reads it and wakes up. Enough BS already. Feel free to update us on this thread…tell us the trouble u got yourself in haha. Friday Feb. 16 2018 Dr.Oz has a Emmy winning episode about your gut type. He has 2 women with him and they show what bothers them. I fell off my chair. Dr.Oz agave, couscous, wheat and white rice. No more beer for u. lol Now Dr.Oz scary monster will have to have on Jennifer, GD and myself on the show. We’ll straighten everyone out. Here we come, ABC Television Center East, upper west side of Manhattan. Can’t wait to see Dr.Oz’s face when I’m leading Goose in on his leash. Jennifer will bring some treats. GD and myself will bring gf beer. SMILE P.S. Do the dryer trick tonite

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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