You're Not a Crazy Mom. Your Child has Celiac Disease.

celiac not crazy
helping celiacs

Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.

Todayโ€™s 30 for 30 blog post is for: All parents standing up for their celiac child.

Here we are on Day 2 of my Celiac Awareness journey and as I look through my backlog of emails, I realize that while many do ask me specific questions (which I’ll get to in the next 28 days), others simply want to vent.

And while some in the community may kvetch that I can be too negative, I also think these stories are important to share. It’s not all sunshine and roses out there in the celiac world folks and I think it’s imperative that people have an avenue to vent. And I gladly take on that role.

But what is my one rule? Let it out…then let it go. Don’t carry the anger with you. Life’s too short.

Anyway, what we have here today is a frustrated mom who is pulling her hair out because her teachers simply refuse to listen and take her child’s disease seriously.

Here’s your story…

I have really enjoyed your blogs! I am the mom of a 5 year old celiac (youngest confirmed diagnoses her pediatrician had ever seen). When she got diagnosed I felt insanely relieved. We had spent her whole young life in and out of the hospital, being made to feel like we were the problem. We were making things up, crazy parents who had a problem with their 3 year old running fevers of 105, aching legs, sore belly and middle of the night screaming.

When they got the biopsy results and we learned we had to cut everything our kid loved out of her diet we were obviously unhappy but at the same time thought we were finally seeing the light at the end of the tunnel. Fast forward two years later and I am now facing educating teachers about celiac, while fighting against the knowledge they were given by parents who’s children had tummy aches and were told to “try cutting out gluten”

There is a big difference between these children. My child was so malnourished by the time someone gave a shit enough to look into the issue, that she would scream with leg pain, was smaller then she should have been, etc. Upon diagnosis we were told to not only cut out wheat but oat as well because she was so sensitive. We were told to not let her touch gluten, play with play doh etc.

I have communicated this time and again to her teacher and yet, today I sit staring at a Christmas tree ornament she made me at school, and as she looks up at me proud of its beauty, my world has stopped. I am in some kind of out of body state and the only thing I see is the f’ing noodles that she glued to the paper.

I immediately think back to the week prior where I sent a note about another gluten filled product that had been smashed to pieces in her school bag when it fell off an art project.

Why can no one trust me? Am I not her mother? Could we not buy a gluten free noodle for the whole class or are normal noodles the only ones that stick to paper? [Dude note: I know it’s not funny, but that line still made me chuckle.]

Just because other parents allowed this in the past does not mean its right for my child. What part of no freaking gluten do you not understand? And for the love of God get rid of the playdoh or find some that’s gluten free.

And definitely stop telling my child that her mother is wrong and she is fine to play with it. I am slowly going back to feeling like I am the crazy one and in realty I am following doctor’s orders.

In the end, you are right. The more this becomes about weight loss and the cool way to solve a sore tummy, the more true celiacs (and their parents) will suffer. My hope is that by the time my girl is old enough to manage this all on her own that people will be more educated and the diet craze will be over. Until then…I’m off to get a letter from her doctor. Apparently my word means nothing.

Thanks for letting me vent….
One frustrated momma….

My advice for frustrated momma is plain and simple. Stay the course. Keep fighting for your child’s health. Educate and advocate as much as possible. Stay calm but stay focused. If your child’s teachers will not listen, take it up the chain of command.

And lastly…you’re not crazy…your child has celiac disease.

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48 thoughts on “You're Not a Crazy Mom. Your Child has Celiac Disease.”

  1. What a frustrating situation! Schools should be a safe zone for all kids to learn in, but in all kinds of ways they’re clearly not. Without knowing anything about the specific school, I do wonder if part of the problem here may go beyond the teacher to administrative issues. I don’t necessarily mean the answer is to go over her head, but perhaps the noodles are coming from a specific, pre-provided supply of arts and crafts materials at the school, and the teacher may not be authorized to buy new gluten-free pasta.

    If that’s the case, the solution might be a face-to-face conversation with the teacher in which you let her know you’re happy to go to bat with whichever admin people you may need to, and that you yourself will supply GF noodles for the class (if that’s the only option and you’re able to). Using noodles in the first place is obviously a bit arbitrary, and probably in part a cost-cutting measure (like using spaghetti as coffee stirrers, which I think someone talked about in a previous letter), but what can you do…tradition. And fine motor skills, blah blah.

    Anyway, since the letter was about an Xmas ornament, the issue might be long resolved by now, but either way, good luck to all parents dealing with this kind of trouble! If only we could all just homeschool our kids…AND still let them develop social lives…AND have fulfilling careers and lives of our own…uh oh, now I’m getting into a “have it all” tangent. Time to stop.

    1. There are plenty of recipes for GF play dough. I teach preschool and that’s all we use. It’s better than the real stuff. Make some and bring it to her school!

  2. Get a 504 plan in place and then sue their butts off for the civil rights violation if they don’t follow it.

  3. I would definitely go to the principal and ask for a meeting with the teacher. Bring in pictures of your child when she was sick.

    I would also buy the supplies. You can find gfree playdoh and ask the teacher to give you a heads up and you will bring the rest in. Teachers usually have to have lesson plans completed a week before hand.

    I am one of those that reacts to gluten topically. I went back to using play doh in my therapy rooms two years post gfree. My hands became red hot, peeled and just plain miserable. She may not, but obviously you can’t keep a child’s hands out of their mouths. That is the much bigger problem. If she has not already, she will get gluttened.

    Good luck. Never feel crazy. You are not alone.

  4. We have dealt with this exact issue, and it is beyond frustrating. It is a safety issue. Surely they would not use peanuts in a class with a peanut allergy. We ended up getting a 504, and start every year with a meeting that includes the classroom teacher, principal and counselor. We also provide any supplies necessary for the entire class. The 504 won’t solve all the issues, but having it in place seems to make the school take it more seriously. Good luck!

  5. I’m so sorry you and you’re going through this. You are not crazy. My son and I were diagnosed last year (he was 13). Fortunately, he is old enough to advocate for himself and does so very well. Don’t forget celiac is covered under the American’s With Disabilities Act (providing you are in the U.S.). The 504 is a really good way to make sure everyone is on notice…especially because your daughter is still young. I wish you lots of luck.
    By the way, “normal” is relative…we are normal. ๐Ÿ™‚

    1. Lisa said: By the way, โ€œnormalโ€ is relativeโ€ฆwe are normal. ๐Ÿ™‚

      Amen, sister.

      I think your entire comment is spot-on.
      So, I will just say “what she said”.

      ๐Ÿ˜‰

      Mom, you may need to purchase all the supplies yourself and keep them in a cool box with her name on it. . (As a former HS teacher at one time myself, I can tell you, we bought supplies ourselves most of the time because the schools can’t afford it)

      The kids need to know why she has her own things, but that’s okay too because she will be hanging around with these kiddos for the next 12 years or so. She will not be the first child who needs a gluten free environment, I assure you.

      Meet with the principal, the nurse, the teacher. This is the first step in making the district aware. Go about it the right way and you will get what you need. No need for legal action or getting angry. Just tell them what she needs. And tell them again if they are slow to adapt. IMHO Best wishes.

  6. I am a school nurse in a small school district. Your child has every right to not be exposed to things that can harm her or make her sick. Her school nurse should do everything in her power to educate all staff about her celiac disease that has a need to know. She should be your child’s advocate when you are not there. You also need to have a 504 in place giving her legal protection to the accomodations she needs. The 504 is not in place so you can sue the pants off the school district. Although that has been mentioned previously. The 504 should be in place to educate those around her to what her specific needs are. If it still doesnt work the casemanager of that 504 is legally responsible to make it right. If no one in the school understands what gluten is and what products it is in then the first step is finding someone who can given an inservice to the staff. So many people just really dont know . It isnt that they want to cause your child harm they just really dont have the knowledge. Meet with the principal, school nurse and teachers. An attitude of we need to make this work and what can I do to help you understand or fill in knowledge gaps goes along way in this situation.

  7. Stuff like this is so frustrating. I respect teachers and know they do the best they can with limited resources, but this is outright child endangerment. It makes me angry and sad that there’s still not enough awareness out there about celiac for this to be understood. Both my kids are very small but have already shown signs that they may have the same issues I do. And I worry about things like this happening when they start school. Gluten free macaroni may be too expensive to use for art projects – especially since many teachers end up paying for art supplies out of their own pockets. But why do they have to use macaroni for art anyway? Aren’t there other cheap art supplies that aren’t food related that would work just as well?

    Keep going up the chain of command until someone will listen. Document every email, meeting, and note sent to the teacher. If they refuse to comply, look into legal action. Protect your child and don’t feel bad if you piss someone off in the process. It’s too important to just let it slide.

  8. I look at this from a team perspective…get the 504 in place & while working on it schedule a meeting with the teacher, nurse AND principal. Make sure you have a folder with the following:
    -note from the doctor (hopefully already on file) needs to detail activities & products she should be exempt from. Should also detail that she’s not to eat, ingest, touch, paste, or play with gluten filled products. Oh by the way paste includes flour in many cases as well!
    -all of the wonderful food art she has brought home. Specifically the noodle & play doh art.
    – Wrapper with ingredients for pasta
    -letter, ingredients list, email from play doh manufacturer listing flour as its #1 ingredient
    -any useful website info on exactly what gluten is (yes the master list of never eat this again)

    Now that you are well armed with paper you need one more very important thing…BALLS. No not the bouncy kind… chutzpa, cahones,huevos. You are going to INTELLIGENTLY & PEACEFULLY discuss this with your childs partners. You don’t get to scream or yell (no matter how badly you want to) because that will only allow them to write you off as whacko mom whose child social services needs to watch. Check your states laws on audio or video taping, my state only one person must know its occuring for it to be admissable in court. A complete record of all that’s said helps you if you can remain calm .

    Write down your questions & have an attorney review them for badgering. You want answers but no matter how dumb previous behaviors have been you CAN NOT attack on that front. For example: slapping gluten filled art on the table & asking “what kind of idiot gives flour products to a kid with a wheat allergy” -NO!!
    Pulling out ingredient info & saying don’t know if you’re aware of the ingredients in several of the products I’d like to discuss, would you mind reviewing these. Then drop pasta & playdoh lists with flour highlighted on table. Follow with “can you please explain to me why my child with a serious allergy to wheat is bringing this home”? Let the teacher explain to her boss why she’s poisoning your child.
    Ignorance isn’t an excuse, but its also not an invitation to freak out. If you go in armed with logic, medical back up & some coaching of how to ask questions so teachers answers get her into trouble you will get “the authorities” on your side. They also get notice you’re not going to be written off as a whacko, won’t go away & certainly won’t accept “your mom doesn’t know what she’s talking about” from a person whose salary you pay. (Don’t say that out loud!)

    1. Perfectly said. Screaming at people doesnt help the situation at all. I work with parents every day and if one stars screaming at me all it does is put up a wall. These situations require a peaceful and calm demeanor.

  9. Anytime GlutenDude posts something about children, I stop immediately and read it – all the way – and all the comments. My daughter was almost 2 when diagnosed, and we have learned how to cope with both daycare, school parties, kindergarten, etc. Every day is a new one for educating – both her teachers and the other parents in her room. And as stated by others, a 504 is really good to have in place.

    We had a FABULOUS kindergarten teacher who was ready to talk with me about EVERY craft (yes… they had ones with noodles too). I brought in her own GF playdoh (Discount School Supplies – an entire line that is GF!!!), her own macaroni noodles, etc. I made sure anytime that there was a class party, I brought in GF sugar cookie cutouts (using fabulous GFJules flour) for the whole class so that not only was her cookie safe, but if they were decorating them, there was no cross contamination with the frostings and toppings. We drafted a letter to parents about birthdays to just let me or the teacher know if they were going to be bringing a treat – not that they had to accomodate (because they would probably pick a nasty-GF substitute that nobody would like), but to let me know so I could bring in something special for her. And now parents are asking me questions and I get to educate them along the way. They are very interested in knowing what they can provide to make sure my daughter isn’t excluded at parties and social activities. I feel very fortunate.

    After having to straighten out some issues with the cafeteria (as I told them that they did indeed have to accomodate her with heating up her meals if requested), I informed the school that they are going to need to know how to deal with this issue, because more students will be coming. And they understood… they said it took awhile to learn to manage nut allergens, and they want to make sure all their students are safe. Many moms in the past have just dealt with it silently… but the one thing I learned from this community, is that WE ARE NOW NO LONGER SILENT!!!

      1. Ah, shucks… thanks. Also, as a sidenote… I do understand that many schools do not allow parents to bring in homemade treat. I apologize for not mentioning that I run a licensed bakery, so it is acceptable for me to do this. I did also mention to all the parents during that I would offer services to them CHEAPER than what they can get at a regular grocery store if it was for a class party – and I do that for ANY parent, at ANY school. I won’t do it for home parties – but I do for class parties. But that gets us to a past topic about why we still need the class party centered around a treat instead of a craft, or just a simple acknowledgement and the class sings… why did it have to get so complicated and crazy and having everyone try to outdo each other? Damned pintrest…

        1. I know, hon. I was just kiddin. It’s just as easy to type Like Like like.!

          (besides I have been on a site with the vote up/vote down thingers.

          People use those as weapons! yikes.) ;(

  10. As a teacher with celiac and the mother of a child with celiac, here is what I have seen work. Get a 504 plan. But also harvest the power of a classroom full of 5 year olds. You could visit the class and read a book like Adam’s Gluten Free Surprise. Tell them how your child needs their help to keep her safe!

  11. I hope I’m not repeatingโ€ฆI didn’t read through the comments yet. How frustrating!!! I just want to let you know that you hopefully are in the hardest phase. Pretty soon those kind of crafts will be out the window and also your child can start to advocate for herself. My daughter was 7 when we was diagnosed and it took about 2 slip ups before she got it and figured out how to police the situation herself. She’s now 11 and she seems to get it and have no worries speaking for herself, and communicating what will happen to her if she gets exposed to gluten.
    But for now, you’ll have to fight, fight, fight! Good luck.

  12. I haven’t read through all the comments, so this may have already been stated. I am a new celiac, but my first encounter with it was with one of my students a few years ago. All schools should have a confidential health list. My student is named on that list. In addition, her parents scheduled a meeting with me before school started to discuss it. Mom brought in snacks that the student could eat, and they were kept in the freezer until needed for parties, rewards, etc. The parents asked me to make them aware of projects in school that contained gluten, and on those days, she brought in replacement items. When notifying the teacher of celiac, be sure to include all teachers that may be involved with the child – art, p.e., aides, etc. If things for the child don’t improve, it’s time to show up at a board meeting and state your dissatisfaction!

  13. I see that several people have suggested getting a 504 plan. That is the absolute best way to get the teacher’s attention. Celiac disease is covered under the Americans with Disabilities Act and once the school is put on notice, they are required by law to accommodate the child’s illness. Get the letter from the doctor and then contact the school’s 504 coordinator to set up a meeting. If the school doesn’t have a 504 coordinator, call the school district office to locate the appropriate person. A plan will be devised that the teacher and the principal (and the cafeteria) are obligated to follow. Above all, be civil in these meetings and bring handouts for the teacher and the principal that detail what CD is and what your child can and cannot have. It was my experience when my children were small that the parent, not the teacher, not the principal, is the only one who has the child’s best interest at heart, no matter what the others tell you. You have to communicate continually with the teacher and the principal and you have to remain a presence at the school. Someone mentioned reading a story about a child with CD to the class. I think this is a wonderful idea. Children will want to understand why their classmate can’t have the same treats they can have. My 6-year old grandson often asks me if something is safe for me to eat. He wants to know so he can help, as will most, if not all, of the other children in the class.

  14. I’m with Gluten Dude–Stay the course. Never ever stop advocating for your child. You are strong and NOT crazy. Your little one is not “picky”, “high maintenance”, etc. Her guts are and you have to go with her guts. If you have not put paperwork in place, please do as soon as you can. Go in again and again and kick some a-s.

    1. I agree, but Mom or Dad should also look as to who is Celiac if they don’t already know. When I was diagnosed, my Mom would have none of it, she was in her 80’s at the time. She told me I was just falling for some new “health” fad like my friends, etc. Incidently, many of her health problems, and my own, when i was younger, could now be traced to CD, but back in the day, few people thought going gluten free was anything but trying to feel better from stomach issues or allergies, which we now know is not always the case.

  15. Get a 504 period. They won’t so anything if its not in place. I got told…I can’t keep parents from bringing in cupcakes…yes you can in a 504…no gluten allowed in the room. My daughter got told to “just pick off what she couldn’t eat”. Um, what part of no eating in your classroom, period, did you not get?? Oh and she has peanut allergies,..you so realize a kid can die from it right? A parent asked if there was any allergies in the class and the teacher said no, well peanut but its not severe…umm, ok…no mention of gluten. Yes. I had a note from her doctor. Had I known about a 504 at the time it would have been requested/followed immediately. They already made her a gluten free meal at school (which they are required to accommodate her).

  16. How sad and terrible, what this mother and her child have had to face from this school. I hope they get this problem resolved quickly.

    GD has faced criticism that he’s “too negative”, but to me this story is a perfect example of why he goes after the Dr Oz’s of the world and frankly I’m grateful for everything he does to counter their appalling conduct. Until their ignorant voices no longer inform public opinion, situations like what’s going on at this school will be what they reap.

  17. I’m all for working things out peacefully through taking the time to educate and getting the 504 in place. That is exactly how it should be done. But reading this mom’s letter again just reminds me of Jennifer Esposito’s recent blog post about “conscious unlistening”. Some people either just don’t want to hear it or they think you’re crazy. After everything this mom has done, it sounds like the teacher simply isn’t taking it seriously. And it’s exhausting to fight that kind of ignorance and indifference all the time. I can get over it when it’s directed at me, but when it’s directed at my kids it’s another story altogether. You have to keep it together, especially when dealing with the school system, but as a parent it’s hard not to get emotional about things like that.

    1. Given the difficulty Jennifer Esposito has had in getting the media to cover her story even though she’s reached out to them countless times, it makes me wonder why I’m seeing so many Debbie Gibson stories the last day or so re: her battle with Lyme disease. Not knocking DG; I wish her well and don’t begrudge her the run she’s getting, but there seems to be some sort of double standard going on here. Why isn’t JE getting the same run as DG?

      Incidentally, speaking of JE, I notice her website can no longer be accessed; if I go to jennifersway.org there’s a placeholder page from GoDaddy indicating the domain name has expired as of April 20. Anyone know the story? I see on her facebook page that she’s launching jenniferswaybakery.com as of May 1, so perhaps she’s just migrating all her content to this new URL and we’re in a “dark” transition period until then.

      For the moment, her “conscious unlistening” blog post, or at least a lo-fi version of it, is on google’s cache at the following link:

      http://webcache.googleusercontent.com/search?q=cache:zJdiobBrKGIJ:jennifersway.org/conscious-unlistening-celiac-journey/+&cd=1&hl=en&ct=clnk&gl=ca

  18. Get a 504, and then get a lawyer. Obviously, your child’s school is not willing to take this seriously. (Suing schools over things like this is quite lucrative for the attorneys. It’s worth your time to find someone who will fight for you, or at least for the money a successful lawsuit would bring.)

  19. Hi everyone!
    I’m Tasha and I am the mom who wrote this frustrated letter. Thank you so much for your support. You have no idea how much just having gluten dude tell me to stay strong at the time helped. It’s been a tough journey as you all know I and love that we can all support each other. In the end I met with the teacher again, the early childhood educator and the principal. I am providing all the gluten free supplies for my daughter to use. She is topically sensitive which is one reason I was so upset. (Outside of the obvious choice to ignore what I had asked). What’s funny is they would send home notes or call about her rash… lol. Anyway, we are doing well, and have found a solution for this year. Since I wrote this I have actually been diagnosed myself after becoming very ill. I am always and will always be surprised at the effect this disease can have on your body. Hopefully one day soon more people will understand and communicating thone effects won’t be so difficult. I wish you all the best and I am hear to support you as well!

  20. I don’t have kids and was diagnosed at 42 years of age and I sitting here in RAGE for you. My guts want me to call the cops, go to the press, cause a STINK but I know that won’t help you ๐Ÿ™ I love the idea of trying to get the other little kids involved. A friend of mine has a 7 year old (called Bianca) that has a celiac in her class. Bianca is SO protective of her little friend and tells her mom all the stuff she can and can’t eat. Her mom comes to work and says to me “did you know skittles are gluten free? Bianca told me”. Crap like that kills me, little ones looking out for each other.

    Good luck!!!

  21. I know others have said it, but getting a 504 plan will be a huge thing. That way the school has a binding lawful agreement to do their best to keep your child safe from contamination.

    I’m a teacher with celiac and I know how difficult it is to stay safe in that environment. Sitting down with the teacher and explaining the side effects and your child’s journey might help. We have a parent at our school whose son has celiac (he is in my class this year) and she meets with teachers before the school year and shoes them pictures of what he looked like pre diagnosis (full of rashes, seriously malnourished and couldn’t keep weight on) and then pictures from 6 months and 1 year after. Nobody can argue with that.

    Also going through items with the teacher that are safe and unsafe – teachers are well versed in peanut allergies but most don’t know any think about celiac yet. You’d be amazed at the questions my coworkers ask me. The pasta thing could have just been a dumb mistake; after all, your child didn’t eat it. (I’m sensitive enough where touching gluten makes me sick and it’s taken two years to convince my coworkers of that fact). School supplies, soap, etc might be places they would never think gluten might be hiding.

    Also, sending in backup snacks that are safe for your child might be good. The teacher can put them in a cupboard and when birthdays or other food-related things pop up, it’s all ready to go.

    I know that won’t fix a bad attitude if the teacher truly doesn’t care, but it may go a ways to show how dedicated you are to helping her keep your child safe!

  22. Kristie Chisenhall

    As I read this post, I am feeling extremely grateful! My daughter was also diagnosed at the age of 5. She is now almost 9 and we have had some bumpy spots in the road, but overall we have been quite fortunate when it comes to awareness. I consider us lucky because my daughter’s school is very accomodating. She obviously cannot eat school lunch, but they heat her home prepared lunch every day so she can enjoy a hot meal too. (They won’t do it for anyone else.) When the school offers snacks or treats to all of the other children, the teachers and other parents always ask if Annah is able to eat what they are providing or if there is something they can substitute for her. I know this probably isn’t “the norm”, but it should be. There have even been parents that send in gluten free cupcakes or treats (after I explain to them how the treats need to be prepared) for birthday celebrations. My goal, as any other mother’s, is to make sure that my child doesn’t feel excluded from anything due to her health issue. Having Celiac Disease is enough. I don’t want her to have psychological problems on top of it! The problem is, these kids don’t “look sick”. So, people just don’t understand. In my opinion, Celiac awareness has spread quickly over the last few years, but there are still so many to educate. I take every opportunity to tell people about the disease because I feel it is my duty. It is our job as parents to make it happen…..by whatever means necessary!

  23. I feel her on the feeling crazy part. My 2 year old sone was dx’ed with type 1 diabetes at 16 months old, and now, almost a year and a half later, with celiac disease. Celiac (and T1D) parents have no choice other than to be “crazy.” We have to advocate for our children!!

    1. Stephanie!
      I’m a Type 1 Diabetic and have celiac disease. If you ever want to talk about it, let me know! It has it’s own crazy set of challenges and I’m finally at a point where I’m ready to talk about it it with others. It’s the pits but it’s nice to know we’re not alone.

  24. I teach preschool and have made GF play dough for years. It is better than real play dough. Make some and send it to school with your child. Otherwise she will keep getting sick! Recipes are everywhere.

  25. I’m a mother of a six year old who was recently diagnosed with celiac disease. His major symptoms were behavioral. He is in kindergarten and this year has been hell! He has been in trouble nearly everyday. We thought he had adhd an had him evaluated and the psychologist confirmed this along with oppositional defiant disorder and anxiety. We put him on medication don’t see an improvement and then he started with what seemed to be a stomach virus but after three bout with this I decided something else was going on and long story short he was diagnosed with celiac. We put him on a gluten free diet and his behavior drastically changed at home. He continues to get in trouble everyday at school. No one ever heard of celiac disease at his school. His teacher seems very skeptical that this disease could be the source of his behavioral issues. She didn’t come out and say it but I can tell. It’s almost like she is determined to continue to put him “Red” everyday. I really think she refuses to accept he fact that she was disciplining a child that was actually sick and had no control over his behavior. I am beyond frustrated. I know people suggest a 504 but the year is almost over and it too late for that. When I told her not to let him play with play dough, she looked at him and said “just don’t put your hands in your mouth”. Funny thing is… I received a letter at the beginning of school stating that there was a child in his class with a peanut allergy and we were not allowed to bring snacks with peanuts. The school lunches are peanut free. I realize my child will not go into anafalact shock and die if he comes in contact with gluten but they need to understand how serious celiac is. She just doesn’t get it and I don’t know what to do!

  26. Well, I am crazy!!

    Crazy mad that because on child in a school of 400 has a peanut allergy no nuts of any kinds are allowed to cross the boundary fence. Two children have coeliacs and “well, thats not so bad”, so bring on the playdough, shared baked goods and so on.

    Hair tearing crazy when attempts to provide gluten free food are met with shrugs of “it can’t be that bad, its just a few crumbs”.
    As a butcher cuts my meat on a board with pre crumbed meat on it. As a teacher cuts my gf cake with the same knife used to cut the g cake. As I read the ingredients of brightly marked gf foods.

    “You’re crazy” is a term I heard constantly. For prepacking my children’s meals for camp. For ensuring that the kindergarden knows about cross contamination. For getting up at 5 am to bake delicious gf treats so my children also have them in their lunch boxes. For spending so much time and energy on food. For not allowing my children to eat anything given to them by people out side of our family. For raising a child who looks up with big 4 year old eyes and asks “is this orange gluten free?” Just one crazy lady.

    If caring passionately for the the long term health of my precious children is crazy – so be it. I say to all you crazy mother’s out there – Lets embrace and celebrate our craziness.

  27. I know this post is over a year old but thank you! I could have written a very similar letter and we are facing the exact same struggle with our four-year-old’s preschool. There seems to be a weekly gluten baking activity going on in the tiny classroom and they keep forgetting about accommodating our daughter. Not to mention play-doh and other crafts. I am glad I am not the only one out there. Unfortunately, it is a private school so I am not sure if a 504 plan would be legally binding on them. So true…they would never allow peanut based projects in the class but gluten is okay…??

  28. A year later on this post but I wanted to say thank GD and everyone for chiming in. My 5-year-old twins were diagnosed in May and June, and it’s been crazy, but more often than not, I just feel crazy. Being the overprotective mom, I’m sure people think I’m helicoptering or something, but I don’t care.

    Raise your voice for when your children don’t have the words!

    In June I emailed the principal, the head of the district’s food program and the head of health in the district (and we live in a huge district in Los Angeles) to let them know my incoming kinders had Celiac, I didn’t even know what that would look like yet, but they had to get ready.

    Over the summer and during people’s vacations, etc., I have forced people (in the nicest demanding way possible) to know that I will be a strong presence advocating for rights, standing in the principles office, going to district offices, whatever it takes. And it works.
    I asked for a 504 right off (thanks to seeing it on a great line of parent responses on another site) and the
    District head told me “you don’t need a 504 for Celiac Disease). I knew she was wrong, but waited to see what happened. They sourced food for my girls from an outside vendor, and these picky kids like it! But school started a week ago and 3 days in they had been glutened. I confirmed it with their GI today, and have emailed fiercely, this morning there was a retraining of cafeteria staff and Wednesday my 504 meeting convenes.

    We are lucky to have a great teacher and principal who takes the time to read and understand. But parents- it’s up to you to push harder And set your rights in place for your child and the children to come, because there will be more and more getting diagnosed.

    Thanks Gluten Dude for this site! It has helped me immeasurably as I struggle to adjust and grow with their diagnosis. And although I AM crazy, it’s good to know I’m not crazy, lol. ๐Ÿ˜‰

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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 didnโ€™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, Iโ€™ve done my job.

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