Sometimes celiac disease makes me cry.
The other day, when we went out for lunch for Chloe’s birthday, I saw Samuel come face to face to a world that isn’t gluten free. In our home he’s sheltered, our home is always gluten free friendly, and Samuel lives with those who understand the importance of gluten free and making his life normal. And then, then at that lunch, Samuel saw a world of gluten. It made him cry, and put his head on the bench, and get a bit mad.He saw the tiramisu that came to our table and didn’t want to wait for his gluten free chocolate cake. He saw food that he could never ever touch.
That was a down day.
It’s hard to see him deal with the reality of not eating gluten. I know it could be worse, I know it, but it still isn’t fair. And that is what I tell him, it’s not fair, Samuel, and I’m sorry.
And it’s simply not fair. If I could take it away from him would. I would take it so quick – the lab draws, the the compromised immune system, the not playing with playdough, the tiredness, the never eating wheat or barley or oats or rye, the whole thing. I’d take it without even thinking.
But, I cannot. And that hurts my heart.
So I fight for him. I fight for restaurants to provide gluten free options. I fight for awareness of Celiac Disease and push for quicker diagnosis. I fight to find and create normal. I fight for grocery stores to stock great food. I fight to explain Celiac Disease so it’s no longer a mystery. And I fight for his heart.
His heart. So important.
It’s so quick to look at an issue and to just dismiss the feelings attached. With Celiac Disease sometimes I find myself saying it’s just gluten and trying to shrug off how complicated it truly is to live with that limitation. And then, then I’ll sit in the hospital sharing our story and I’ll have a nurse tell me how much she respects parents with kids that have to deal with such life changing conditions.
I forget the life part.
And those are the downs.
But, I don’t sit there, I just don’t. I look at that sweet little face and how much he teaches me. Even after grumbling about not getting dessert he quickly became grateful for the good. I think about his health and how he’s thrived in the last two years since he was diagnosed. And that is what I remember. It will be two years very soon since I heard the doctor on the phone tell me that due to the lab panels it looks like it is Celiac Disease and that we need to do a biopsy immediately. I remember staring out the window on that dreary January day with tears running down my face – tears of sadness mixed with tears of relief for finally getting a diagnosis. You see, with knowing that it is Celiac Disease I also learned what to fight and what to do to bring life and health back to my boy.
Celiac Disease may have its downs but my son has taught me the ups.
He’s taught me to embrace today and to love the moments and to be grateful for all he can have. He’s taught me how to fight and not give up. He’s taught me to say thank you and be positive even when things are challenging. He’s taught me about finding joy in the little things. He’s taught me to embrace the good. He’s taught me that it’s okay to laugh and to cry and to sometimes do a bit of both. He’s taught me about the importance of speaking up and teaching.
Today is an up day. Like most days – and those days really help me through the down days. In fact, most days area just normal, and I don’t think of the limitations of Celiac Disease and instead I simply remember how amazing it is to have a boy that is healthy and running around my home.
Samuel is healthy. He’s wandering around carrying his stacks of books and smiling.
And for that, I am always grateful. Always.
What questions do you have about Celiac Disease? I am a very proud community leader on the Udi’s Gluten Free Boards. This forum is set up to encourage those that are living gluten free or those who are curious about learning gluten free. I write and share a great deal about my experience in raising a child with celiac disease. You’ll find fabulous recipes, great links to encouraging sites, and fabulous support. I’d love to have you connect with me over there as well.
Here’s the link -> Udi’s Gluten Free Community.
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My daughter is allergic to eggs, milk, blueberries, agave and tree nuts and boy do we understand these moments! We have filled our home with vegan and “Abby friendly” foods. It is so hard when she goes out into a world of food she can’t eat. So hard as a Momma to watch them be “left out”. I think in the long run they will be tougher, stronger, healthier people. It’s just not an easy journey!
I hear ya- We have celiac here, also. My daughter (15 years old on Friday) was diagnosed at 3, along with myself soon after (I was already allergic to cow dairy) and her younger sister a few years later. It’s a family thing, but one that has brought new friends, a blog and teaching jobs for me and an appreciation of the little things (like not having to bring your own cupcake to a birthday party, because they have gluten and dairy free food for you- WOW!) The very first time my daughter ever had a gluten free pizza out was when she was NINE years old and we had our first ever pizza delivered to our house when she was 12. Which are both things that people take for granted every day, but for us was like a visit from Santa… Making homemade fortune cookies or chow main noodles for your kids just because they have never had them and are wondering what they are like, the packing of not just a swimsuit but a week’s worth of food for camp, all those things are the bits of celiac that can be tough, but bring blessings, too. Like the strong confident girl who can stand up for herself, because she has had to for safe food, who can articulate so clearly her needs because she has had practice, but who also has such strong compassion for the needs of others because she understands… Those are blessings that I never envisioned when she was three…
It is wonderful you are a part of Udi’s GF community. Thanks for being a voice for the gluten free community! (hugs!)
It is lifelong and even when it is life long the feelings of missing out are still there. I’ve never had the diagnosis. I can’t afford the testing, but if I eat any gluten I am sick. That proves it to me that I can’t have it. It may not be celiacs, but an insensitivity. My Mom was just in tune with me. When I was born she didn’t know what Celiacs was. She just knew when she ate foods while she was nursing I was sick. So she quit and then when she started feeding me gluten made me sick so she made rice “bricks” as she called them.
As a teenager I was the kid eating the rice cake with peanut butter as there were no good breads out there.
As an adult I find the blessing in people like you who advocate for celiacs. I can go out to eat and I can cook with amazing gf items. Thank you.
Blessings on you and your family.
I completely understand where you’re coming from. My son is 7 and is allergic to eggs, peanuts, all treenuts, sesame, fish and all shellfish. This past year he has alternated between trying to convince his cousin Josie that she is allergic to all of the same things he is, to getting upset and crying because everyone is not allergic to these things. He has uttered, “That’s not fair!” more times than I can count. And it’s not. Thankfully his constant blood draws are something he looks forward to thanks to an amazing staff at the hospital, and the invention of those butterfly needles 🙂 He loves the staff at the allergists, who we are still seeing every other week. And I have learned enough to become a very strong advocate. However, he will never eat these things, he will always be in danger of cross-contamination, he will always have to carry epi-pens, and I will always worry. But I love him, and he knows it, and that’s what is the most important piece.
I can’t even imagine having to explain any kind of a food allergy to a little one. My husband was diagnosed with Celiac a few years ago, and I’ve seen how hard it has been for him not having some of his favorites. Luckily for him he understands that he has to have the alternatives. And lucky for all of us, gluten free option have gotten so much better. Udi’s is one of his favorite brands.
Aw, you’re such a good mom 🙂
It was not until this past August that we figured out what had so long been causing my oldest, youngest and myself so many health problems and mental problems. And it was a simple elimination diet that caused the ah-ha moment, not a doctor. We don’t have insurance. And state doctors in our area… well, they are NOT an option.
We have made our home for the three of us gluten free and mostly dairy free. We are finding lots of joy in experimenting and learning and finding lots of great foods that are gluten free. It is when, on the VERY rare occasion, that we go out to something that has food or out to eat where the problems arise. Where it is more obvious that we can not eat this or that….
I think you are a GREAT mom! 🙂
Am thinkin’ he’s going to grow up to be a doctor…
Always keep your eyes on the Lord! Lifting up prayers right now!
Proverbs 3:5-6 Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.
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First of all, I would like to say that I have nothing but respect for you. I think you are an amazing mom and I love your blog, I read it almost daily and more often than not it is exactly what I need to hear that day. I have been reading your celiac disease blog posts and I have been praying about it and trying to figure out how to say what I want to say without it coming across as criticism, because I ONLY mean to encourage you by saying this. So here it goes: I do not know what it feels like to have a child with celiac disease, but I do know what it feels like to BE a child with celiac disease, and let me tell you…it’s NOT THAT BAD. It’s really not. In fact, it’s GREAT. It’s AMAZING. It’s a HUGE BLESSING. And it always has been, since the second I was diagnosed. Here’s why: I was SO SICK for so long and there could have been any number of things wrong with me. To find out that all I had to do was eat different food, well that was just EXCITING. I didn’t need surgery. Or medication. Or a daily injection with a syring. I just needed to eat gluten free. Please, for your son, REJOICE about that. He is not paralized. He did not lose a limb. He is not fighting cancer. He just has to eat gluten free. For me and for Samuel, that is a wonderful thing. It is GREAT that we live in a time period where doctors know what celiac disease is and can diagnose it with a blood test. 100 years ago, me and Samuel would have just starved to death. It is a HUGE BLESSING to be diagnosed. I rejoice in the fact that there are so many delicious gluten free options out there. Me and Samuel do not truly have to miss out on anything…we can eat cake, cookies, bagels, cheesecake, pizza, mac and cheese…EVERYTHING that anyone else can eat. It just tastes a little different. After a few months of eating gluten free, I really don’t rememeber or care what any of that stuff tastes like. It doesn’t matter. It’s poison. I still get to eat delicious food. I still get to be healthy. And live a normal life. It’s not a handicap. I just have to eat HEALTHIER versions of what everyone else eats. I might even live LONGER because I am not eating stuff with tons of preservatives and artificial flavors and things that make even normal people sick. Samuel eating healthier than most people is not something to cry about in Target. It’s something to rejoice about because he’s so healthy! In fact, my two little girls are on a gluten free diet just because it’s healthier. And they don’t miss a thing. I urge you to please please take your own advice and FIND JOY in Samuel’s celiac disease. If you don’t, he will see your attitute. He will see your pain and see you struggling and hurting for him. And it will not do him any favors. It will either cause him to 1) feel GUILTY for his disease because he’s making you hurt or 2)your attitude will rub off on him and he will start feeling sorry for himself too. Both are just wrong. He does not need you to tell him “I’m so sorry Samuel, this is just not fair” or he will start thinking that way too. He needs you to encourage him. To remind him of all the wonderful things that he DOES get to eat. And how BLESSED he is. I have spent time in Haiti and watched little kids starving on the streets. Samuel is rediculously blessed to live in a home where his tummy is constantly stuffed full of healthy, gluten free food. So please, for your son’s sake, no more tears in Target. He deserves more from you. He deserves for you to constantly be reminding him of all the blessings in his life.
This post made me tear because I just found out that I have celiac disease and although I should be grateful for finally knowing what’s wrong with me. I can’t help but feel hopeless. I’m fight a battle all alone and I have all these feelings of knowing ill never be normal. I can’t go out eat anymore without being annoying to a waiter. There have been moments this past week when all I wanna do is cry because people don’t understand how this disease is change for a lifestyle I been used to for my whole life. Reading your blog post also gave me an idea on how my mom must feel… Having heathy child her whole life and now finging out that I have had something my whole life that is possibly been killing me inside. I’m sorry I’m spilling my drama onto you… I just loved your blog post it made feel like its okay to have my downs and ups.. Thank you and your amazing mom. Good luck with everything.
I have celiac disease and I hope all who are diagnosed with it focus on the wonderful foods we CAN have. My goodness, the gluten free junk food will not keep us celiacs thriving. Teach the wonders of whole foods, not only great for us celiacs, bur great for everyone. I send this with love and kindness as I have seen far too many a celiac dealing with secondary AI diseases eating a “gluten free” diet.