A Mother’s Note to her Celiac Daughter (Have Tissues Handy)

mom note to celiac daughter

Happy Friday everyone. A few quick Dude notes before I kick things off.

Note #1: I’ve gotten a bazillion messages asking me about the Pizza Hut gluten free pizza. I’ll need more info before making an informed opinion. My original thought is that at least they are blowing away how Dominos went about it. (See my thoughts on the Dominos debacle here). I am trying land an interview with them to learn all of the facts. Stay tuned.

Note #2: Bart’s team (yes…that Bart from Bart’s Bakery) has reached out to me to apologize and to actually ask for my help. Hmmmmm…

Note #3: I know my style is not for everyone. If you choose not to follow me…no hard feelings. Just please do it quietly and gracefully.

Ok…moving on. So after my last celiac rant post, the emails with more celiac rants starting piling up in my inbox. Loved reading them, but one really caught my eye. The author called it the oddest rant of all and indeed it was. It was a beautiful note from a mom to her celiac daughter.

I was eating a raw onion while first reading the email, so I’m not quite sure where the tears were coming from, but I’d have a hanky nearby, just in case.

I’m the mother of a wonderful, intelligent, caring, amazing 14 year old girl who has celiac disease.

To my daughter, in what is probably the oddest rant of all, stop letting this disorder make you question your worth. People can be judgmental and horrible even if you seem absolutely normal and perfect. It’s the human way of dealing with our own insecurities. You can only feel picked on and singled out by Celiac if you allow others to determine your worth.

Please stop feeling as though this disease defines you. Your intelligence defines you. Your attitude, your caring nature, your dedication to those around you. These things define you. Celiac Disease is just one very tiny portion of the total sum of who you are. Draw power from it. Draw confidence in knowing that in defeating this you have proven you can take on anything. Be fearless!

You’re amazing. You faced this unknown head on, suffered through pain, doubt, misdiagnosis, missed schooling, multiple medical providers, accusations by uneducated people around you and you came out ahead. You have a maturity far beyond your years. You are an example of how to deal with an adversity. You are a role model. Your determination and perseverance to find your way to good health makes me far prouder than any material accomplishments.

I love you. Please remember, you’re a fantastic young woman and an inspiration. I’m in awe of you and profoundly proud.

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22 thoughts on “A Mother’s Note to her Celiac Daughter (Have Tissues Handy)”

    1. I asked them to. So at first, they had it redirecting to the Bart’s Bakery site, which I wasn’t to pleased about. Not it’s redirecting to my site. It’s a step in the right direction.

  1. As an over weight kid, growing up I questioned my worth a lot. My fantastic mother placed a tiny, solid gold necklace around my neck. She said “This is to remind you that you have value.” I still wear it.

    1. I’m so glad to hear stories like yours where an overweight child was supported by their parent or told they’re valuable or still beautiful or smart or anything positive. My mother called me horrible things to point out how overweight I was (which only made it worse, emotionally and physically…I was only a little overweight until the name calling came from family, then I was defiantly ready to get as big as I could just from hatred)!

  2. I don’t have celiac, but both of my kids do. Being the parent of kids with the disease is a different challenge — I can’t exactly know what it’s like to have the disease and deal with all that comes with it, but I can imagine it. My kids were young when they were diagnosed, so we’ve had to learn together with me out front, blocking and tackling. Learning to cook, navigate school, parties, friends, family, etc. The biggest challenge, though, is teaching them to advocate for themselves, firmly, but with grace. It’s hard for a kid to look an adult in the eye and tell them, no, I can’t eat that. Especially one in authority. Or one rolling his eyes. It’s hard for a kid to tell a doctor not to dismiss their questions as silly or irrelevant. Heck, it’s hard for an adult, especially one that does not enjoy confrontation. But celiac disease is forcing them to learn to do these things now.

    So I love this mom’s message. When my kids have melted down in the past with ‘why me’ and ‘I hate this’, I’ve tried to argue with them, build them up. Now I see that they melt down sometimes about my-hair-is-too-flat (my 12 year-old daughter) and when-will-I-be-able-to-dunk (my 9 year old son) — it’s just a part of them. So the lesson this mom teaches is a beautiful one — celiac is a part of you, a part that you constantly have to monitor and manage, but a just part. It makes things tough, but it contributes to your character, your learning experiences, your opportunities to stand up for yourself and others who come behind. It’s tiring, exhausting and overwhelming at times, but you should always stand up for what is right, especially when it’s your health, and take whatever opportunity you can to teach people who are open to listen and learn.

    Celiac disease is molding my children in ways that I could never imagine — they are learning to research and become informed, moreso than some of their doctors. To educate others. To empathize with people in ways that I could never teach. To be strong and courageous, to persevere. To crumble every once in a while and to pick themselves up again and move forward. Always firmly, but with grace.

      1. Hang in there — I seem to have a harder time with this sometimes than they do. the best is when they turn to you and say ‘yeah, we know mom. It’s okay.’

  3. Beautiful note to this 14 year old girl from her mother. Part of me is secretly jealous that this young girl found out she has Celiac at such an early age, and part of me feels sad for how difficult it must be to navigate social situations as a teenager with Celiac. Teenagers tend to be far more judgmental and nasty about anyone or anything that is different, so I can imagine it’s extremely hard to explain this to kids who have ten hundred other things to figure out. Girls in particular can be especially nasty and now with social media, how do they survive all of this social pressure? She may not understand it until later in life, but she is very lucky to have found what is wrong so that she can be healthy and thrive. I would give anything to be able to go back to that age and have my health back. When health is taken from you and you and your doctors do not know what to do about it or what it even is, it’s the most frustrating thing imaginable not to mention it robs you of your life. Anyway, she is so blessed to have a mother who understands, encourages her and supports her through this.

    1. One particularly ‘mean girl’l sent delivery pasta to our house for my daughter. Another had a cupcake which she waved under her nose at a party, sneering ‘Hmmm, you can’t eat this, can you?’ Another told her, when she brought gf food to school, ‘I wouldn’t feed that to my dog.’ It’s been a learning experience! Character-building for all of us for sure.

      1. I fear this for my daughter. She was diagnosed at 3 and is just about to turn 7 in a few weeks. It has been a rough road at times but we seem to be managing through it. She definitely struggles at the birthday parties almost all of them serve pizza and cake. We are very blessed though a few families make special accommodations for her to help make her feel the same. The classroom parent for her class has celiac so far every party everything there has been safe for her. I cried I didn’t have to make a special thing for her to try to match the other kids, she could eat everything. I made the baked goods for the class but everything else was safe and I had no fear of cross contamination.

        I am so sorry your daughter has had to deal with such mean spirited girls. My girlie is a toughy probably her brothers influence but I’m not sure how she would handle someone purposefully being so mean.

    2. We would suggest that there is another very important topic: our behaviors. Why we should think Celiac is different, not normal, not like “us”? Are we socially correct when we face someone with Celiac disease? How we behave with all the other celiacs and not just our relatives? (if any)….

  4. That is an awesome letter to her daughter. Really the truth, and something that someone who at that age, needs just a little more motivation on how great they are.

    I would love to hear your feedback after you get to talk to Pizza Hut. I really want to know how they are “stopping” CC in the baking process. They say they will put down parchment paper, but I’ve always been told not to bake GF and non-GF things together. So my concern comes into, the top of the pizza being left vulnerable to the gluten in the oven in the air. If I could get that answer, I’d calm down on my rant that I feel this will turn in to Domino’s, or California Pizza Kitchen’s initial release that they got whipped for.

    1. I’m waiting for your response on it too. I told my husband about this and his first response was, yeah right, it will be cc so we won’t be eating it. That’s how I feel about Papa Murphy’s and still haven’t tried it. We only eat Pie Five as they have the best knowledge of Gluten Free of any place I’ve seen!

  5. Yep, I was eating an onion sandwich as I read this too . 🙂

    This week has been particularly rough for me online. I’ve been put in the position of feeling like I’ve had to defend myself and my diagnosed medical condition more than once. I even deleted a so-called friend from Facebook because of it. This lady’s words are the exact message I want to pass on to my kids. And I hope that how the current generation of celiacs address the struggles, the doubt and ridicule, and sometimes just plain cruelty that people dish out to us because of a medical condition we never asked for, just might make things easier for our kids if they inherit it.

    I see a cocktail in my future today. Happy Friday all and cheers!

  6. As someone who was diagnosed in elementary school and was bullied about Celiac forcing me to switch schools at one point, THANK YOU FOR WRITING THIS RANT. My mother tried her best at helping me through all my trials and tribulations with Celiac but self worth is a realization you have to come to on your own. This mom hit the nail on the head. It took me over 20 years to separate my self worth from my health. When it’s so finely intertwined with something like Celiac that will have its ups and downs with cross contamination and flare ups and possible secondary conditions, it can be even harder to accept that it’s only a part of you. But this rant helped me in ways I can’t even comprehend. It’s as if this mom was talking to the 14 yo girl inside of me who was made fun of and taunted and was always sick. So thank you from the bottom of my heart for this closure you somehow provided me 11 years after that time in my life. Every Celiac needs to hear this rant.

  7. Something I think the kid in all of us needed to hear. Kudos to that Mom for writing it and being such a great support system for her kids, and thanks to you, GD, for sharing it.

  8. Kudos to this mom for writing this. I was in my mid twenties when I was told I had a gluten intolerance. I had to learn everything myself. My mom is very slowly learning. I remember the first few months crying to my mom about what I cannot eat anymore. I got diagnosed right around my birthday I was so upset I wasn’t going to be able to have a cake. Don’t judge me, yes I was in my mid twenties, but the only time my mom used to bake is for birthdays. This was also before betty crocker came out with her cake mixes, and before I found out about the other mixes. My aunt and uncle go out of their way at their house to make sure whatever is made I can have too. Luckily I have a cousin that has food allergies so my extended family is use to saving wrappers, containers,etc to see the ingredients. The sad part is that some former friends of mine kept telling me there is no way you can have an intolerance to wheat because we need it in our diets. The sad part is that they work in day care centers.

  9. Kudos and hugs to this mom. I would be a very different person today if I had gotten this kind of support and encouragement with all my medical issues. You are a great mom!

  10. LOVE this letter and it really hit home. Myself and my two daughters have Celiac Disease and lately my 15 year old has been struggling with fatigue and illness. I’ve been giving her pep talks but now I’m inspired to write her a good old fashion letter and tape it to her bathroom mirror to serve as a reminder. Made me cry too, but it was therapeutic!!!!
    Thanks for sharing, Dude!

  11. Thank you so much, Gluten Dude, for sharing this beautiful rant. What a wonderful role model that mom is.
    Keep it up! You truly are a bright spot in my day!

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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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