Celiac Disease / Gluten Free Restaurants / Uncategorized

Celiac Disease Turns Out to Be Awesome

gluten-free kidsIf you almost threw up reading that headline, know that I’m with you. Still. It turns out that I’ve discovered the most useful thing about having celiac disease—you can help other people when they receive the same diagnosis. Which is what just happened. But before I get all wise and zen-like, let me just say this—

FUUUUUUUUUUUUUUUUUCK! Fuck you, celiac and your warped genes and your stupid fucking tendency to ruin everyone in my family. FUCK YOU. Double fuck you. Triple, quadruple fuck you, you stupid motherfucking fucker. I HATE YOU CELIAC.

Deep breath.

So my daughter was diagnosed with celiac disease last week. She just turned 7 so hey, she’ll never know what she’s missing out with the whole beer thing, but she’s also 7 and finds herself at a birthday party damn near every weekend. Yes, I know to take my own advice and load up on gluten-free cupcakes and treats (which I did this past weekend). I also know that there is no one better equipped to deal with my girl’s brand spanking new autoimmune disease. Yet when she’s crying in the corner because she can’t eat anything the other kids are eating, well, that hurts my heart. And when I stop and think about all of the other potential complications and illnesses, well that’s when I break down and start using the “f” word repeatedly.

Still, she did have all kinds of fun writing this note to her friend, Molly.

gluten-free kids

That’s “Illustrated by Ivy” in case the spelling threw you off

Please note, the devoured gluten-free rainbow cake alongside her “secret” note.

When I wrote my book I included a chapter called, “Holy Crap, My Kid’s a Celiac!” But I wrote it for everybody else. Naturally I’m regretting repeatedly crowing about the fact that my own kid’s don’t have celiac, and now that’s in print for, like, ever. I keep looking back on my own notes to remind myself that a) It’s going to be okay, and b) Mama knows how to make gluten-free ice cream cone cupcakes (see photo above, recipe in upcoming book). Additionally, I’m incredibly grateful for the community surrounding my daughter’s school. There is a student who is diabetic and has to be repeatdly tested throuought the day. They handle it. I’ve already sent a note about her situation, since we discovered it on spring break, and I’m confident she’ll be taken care of between the hours of 8:45-3:15. I also told a friend of mine about her new condition and at a birthday part just this past Saturday, this magic appeared:

celiac kidsThat was a batch of gluten-free double chocolate brownies with cream cheese icing she whipped up for my girl (and by association, me). SO NICE.

So my girl is in good hands, and I feel so incredibly lucky to have gone there before her. While I’ve never been grateful for my celiac diagnosis, all of a sudden I am. I can cry with her in the corner, and when she says (as she already has), “But I want that!!” at a restaurant, I can wail alongside her, “Me toooooooo!” Of course I’m devastated. No matter how much I can handle this, it sucks. You don’t want your child to have a disease, even if it’s manageable. I do believe that goes without saying, yet, there I am. Saying it, just in case it wasn’t obvious by that whole cursing thing earlier.

My girl has celiac. I hate it. But I’ve never been more grateful to have it myself.

Oh, and parents of celiac kids – how do you deal?

32 thoughts on “Celiac Disease Turns Out to Be Awesome

  1. I’m in a fog! I’ve been so careful not to gluten my 13 year old son. Diagnosed last September, I watch EVERYTHING like a hawk! I kickass at restaurants who drop the ball. I hold everyone and every company accountable. Im Celiac, I am the mom from hell. back the fuck away with your gluten and nobody gets hurt……..Then last night at my sisters house (she cooks GF for us) I thought I let my son have a glass of Pepsi…….it was a glass of diet dr pepper. Within two hours, driving home he’s writhing around screaming and cry, begging for a normal life. I call my sister to get the full rundown of what he ate/drank. My nephew says diet DP! FUCK FUCK FUCK FUCK FUCK!! IT WAS ME! I GLUTENED MY OWN SON!! How do I cope? I cried all the way home and and cry myself to sleep. Then later in the evening he comes to me and says “it’s ok mom, it’s not your fault, don’t cry”.

      • It doesn’t. From Dr. Pepper’s website – “A: All of our products are considered gluten-free. Note: All products, which contain High Fructose Corn Syrup, may contain trace amounts of corn gluten. According to the Celiac Sprue Association, corn gluten is not harmful to people with Celiac Sprue disease.”

        (but besides from the correction – so so sorry to all you parents struggling with this. I have worried about passing celiac on when/if I have kids – I’m sure this completely sucks.)

  2. I found myself crying by the end of your post. Really, it was the letter to Molly that tore at my heartstrings. I am celiac, and I have a sneaky suspicion my 6 year old daughter is too- you know that mom’s intuition thing. I have really been handling it with a “head in the sand” kind of attitude- even though the “good mom” in me tells me that it is better to test and know now. My eldest daughter’s best friend (12) has a tree nut allergy, and is so easily embarrassed when the other kids in class find out. So your daughter’s wanting it to be a secret really got to me too. Kids don’t want to be different. Thank you for sharing this- it really does help to know that there is someone else out there that thinks the way I do. F it all!

    • If my mom had not been tested and my daughter has not just had unexplained fatigue, I would not have done it. I did feel that mom’s intuition thing as well. Still, I did consider waiting until “something really bad” happened so she wouldn’t have to upend her life. So yeah, I get it.

  3. I think my son has celiac… he’s almost 18 and I can guarantee you he’s tried beer 😉 I want to get him tested but it took me about 7 years to get diagnosed and *sigh* do I really want to go through this crap again? Anyway, I am going to talk to him about it and kind of let him handle this. Totally breaks my heart though. I hate the fact that I’ve probably passed this on to him and screwed up his life.
    And yeah…. fuck you celiac!!!

  4. My dad has celiac. My 4.5-year-old son was diagnosed two years ago (THANK GOD through a public health study and not due to a mystery disease). I’m waiting for the day when it’ll be my turn. Also, we treat my other son (celiac boy’s identical twin) as if he had it, because he almost certainly will, eventually.

    And it’s hard. We have discovered a couple of kid-friendly, GF-friendly spots, but the options are way fewer than for others. I keep little cupcakes in the freezer for emergencies. They know to ask. They’ll be attending the school where I work, and one of the Kindergarten teachers is GF, so that’ll help. But then (you’ll love this) I mentioned casually to one of the lunch ladies how sad it is that they’ll never be able to have school lunch because they can’t have wheat and she said, “What do you eat at home, a lot of white bread?” Holy shit.

    And when I do find someplace with, say, trustworthy GF pizza, then they’re all, “Your pizza is better, Mom, why can’t you cook ALL THE TIME?” Which is flattering, but sometimes Mama needs a break.

    But I still volunteer to bake the cakes for every party they get invited to so they won’t feel left out.

    Anyway. You know what to do. You have my sympathies.

  5. Ugh, April, sorry. I went through a serious health scare with my son and know the heartbreak of wishing that your child didn’t have to cope with something that they do. And also the relief that it isn’t worse. But that it still sucks. I don’t know that it means much to you now, but your daughter is a lucky girl to have you as mom. And not just b/c you’ll kick her Celiac’s ass (though that’s a part of it, too).

  6. Aww, you’re such a good mother! I would give anything to have such a supportive mom, but unfortunately nobody in my family understands me. I’m 16 years old and I think I’m old enough to take care of myself, but sometimes I just wish there was somebody next to me who would understand me instead of yell at me “Just get over it, you’re ruining everybody’s mood!!” I have to cook for myself if I want it to be 100% gluten free, because my parents won’t take good precautions when cooking. I’ve been glutened by my mom before, therefore I don’t trust anybody touching my food anymore.

    • Jeez louise, Bridget. It sounds like your mom needs to get it together. I’m so sorry no one is there to support you! I’m sending you a virtual pan of gluten-free brownies.

  7. Oh no. I’m so sorry to hear about your daughter. That really sucks. Still, she’s lucky to have a great role model to learn from. If people ask her, “How do you do it?,” she can just shrug modestly and say, “My mom wrote a book about it, no big.”

    I’d really like my brother and sister to get tested because they’re first-degree relatives, even though they don’t have major health problems, as well as a young cousin of mine who I know HAS had health issues. Of course, I don’t really want them to have celiac disease, but I do want them to take care of themselves if they do. It’s tricky to negotiate because I don’t want to sound as though I’m just looking for company in my misery. Though, of course, I could be company to them in theirs, and hopefully teach them a few things, even though I’m new to this myself.

    (By the way—no, everyone, I’m not the Molly from the letter. When did this name get so popular?)

    • Ha! Although it would have been super cute if my daughter was writing letters to other celiac bloggers. She’s not quite that savvy yet.

      You know, after my mom’s discovery I bugged the hell out of my brother until he was tested. He’s all clear. So while I’m now officially suspicious that everyone in my family has it, clearly that’s not the case. But when your symptoms are even more severe, like my mom’s dementia, it is important to have your family members checked out so they don’t wind up like she did.

      Good luck, Molly! And thanks for the kind words.

      • from my son (diagnosed at 7, now 11yo) to your daughter: “I hope you’re not letting being a celiac sadden you. When I was first told I was a celiac, I was disappointed, but there are plenty of gluten-free foods out there and my friends were very sympathetic. I hope you don’t worry about being teased. I’ve been a celiac four years and nobody has teased me or made fun of me. If someone does make fun of you, just ignore them and remember that it’s not your fault. Plus, there’s nothing wrong with being a celiac. If you think it’s going to affect your life in the long run, that’s not true. You can still live the life you want to live. I hope my ideas help you. They certainly helped me.”

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  9. Oh man! April I am sorry to hear that you have discovered that your little one has this… But like you said, at least finding out now, there will be things she won’t ever have to mourn the loss of. That can be one of the worst parts of this stupid disease. Getting over and letting go of the things you loved but can never have again. Though, I am finally in a place where there is no food on this planet that is worth dying for… All that being said… I popped over here to ask about the following the foods. What have you all determined is the truth surrounding the “wheat/gluten” content of
    PROCESSED LUNCH MEATS, HOT DOGS (other than Nathan’s or Hebrew National) ?
    And to give everyone a heads up on Walmart’s Great Value Brands… Do NOT purchase these items… almost EVERYTHING they make (with the exception of frozen/canned plain fruits and veggies) has a wheat warning on the label… (EVEN THEIR SO CALLED “NATURALLY GF’ INSTANT POTATOES!!!!) Can you imagine how PISSED I was to get a box of Great Value Instant Potatoes home and getting ready to make them, I thought… just in case, I am going to read that ingredient list… and sure enough not only does it list wheat in the allergen warning… it lists about 15! 15 FUCKING ALLERGEN WARNINGS!!! CAN YOU BELIEVE THAT SHIT??
    Anyway… just thought I would let you know that… Any info anyone can give me about the foods I asked about would be greatly appreciated.
    Hate this disease… love the community!

    • Yeah, it’s tricky. If there’s anything processed, it’s suspect. Also, the cheaper the product (like Wal-Mart) the more likely it’s got gluten fillers. Boar’s Head and Applegate lunch meats are gluten-free (although I don’t eat a lot of Boar’s Head, so I can’t speak to every lunch meat they make, I’ve just heard this is true – always ask). I only eat hot dogs that have a gluten-free label. Again, Applegate is great about this.

      When I was writing my book I asked my dietician about alcoholic drinks like vodka, whisky, rum, etc. They are gluten-free. Even if it was made with wheat or barley, the distillation process removes the gluten (there is a more technical and accurate term/description but I can’t recall is at this moment). Cool Whip is gf, Nutella is gf.

      I think the most important thing to remember (again) is anything processed is suspect. If it has more than one ingredient, you have to check it out. Listen, I love Cheetos, but I know that the only way to be sure I’m not getting gluten is to eat whole foods. It sucks, and I absolutely skirt the edges of gluten danger in pursuit of something fast and easy at times. But it’s not smart.

      At the risk of sounding like a conspiracy theorist, when it comes to your food TRUST NO ONE. 😉 But yourself. And definitely not Wal-Mart.

  10. I do not trust Walmart with my food. If any label is even remotely vague, I avoid it. I recently started shopping at Aldi which is a discount food store. I love that place, and the coolest thing about their products… if it is gluten free it says so on the package. So I buy a LOT of items there… It has helped to bring the cost of my rising food bill back down.

  11. I’m so sorry for you and your daughter. My 3 year old son was diagnosed at age 2. The “he’ll never know what he’s missing” argument gives only marginal comfort and then it’s preschool snack time and one of the other parents forgets to tell you about the special totally awesome glutenous holiday treat they brought and your kid is stuck with a bag of half-stale gf pretzel sticks and apple slices and you feel awful all over again. One way we deal is by giving our son special treats when we see them. For example, last weekend we went to the farmer’s market and, viola, out of nowhere there was a gluten free bakery stand. He picked a chocolate cupcake and ate it on the spot — at 8 a.m. We give him the carousel ride at the mall instead of food treats, etc. It’s still hard, not at all inside the home, but out in the world, feeling like your kid is different and will have obstacles throughout his whole life (I always think about high school roadtrips and last minute college pizza runs. I’m sure they’ll be a way for him to substitute GF options, but the fact that there needs to be consideration is a bummer.).

    My husband and I don’t have celiac disease (yet?), and every time I eat gluten outside the house, I wish it were me who had it. My 1.5 year old carries the gene and because his sibling has it, has a pretty good chance of developing it at some point. With increased awareness and better diagnosing, more people who have been suffering are going to learn what ails them — gluten — and the kids with celiac won’t seem to be on the margins of society. It will be just one thing of many that some kids have.

    Hang in there. She’s lucky to have you and all of your GF knowledge.

  12. aw, noooo! noo! no! that must really knock the wind out of you! but, who better to be her mom and how lucky she is! i hate wheat for you!
    and, i hope she writes a kid book soon! Ivy is one awesome illustrator!

  13. Holy fuck! I’m SO sorry April, I somehow I un-followed your blog by accident (cause I’m that tech savvy) and totally missed this post until now. This sucks, and my heart goes out to you since I know the evil that is gluten birthday parties. Yeah it’s awesome that you’re her mom and you bake insane shit (um, hello Rainbow cake) but my heart hurts for you as a mom because I know how it feels to watch your kid feel pain (and with celiac that’s physical and emotional).

    I do not want to be annoying and say it gets easier, because it does (thank god) but honestly, it kind of always sucks. But the thing is kids almost always adapt and adjust waaaay faster than we do, so soon your girl will be her own awesome advocate and be baking rainbow cakes alongside yours. But it’s a life thing, duh, with ups and downs (um, as you know) so good luck my friend and hang in there.
    -Dana (hope this made sense and doesn’t suck)

  14. Wish we could get your daughter and my Emma (from the GF expo!) together for a playdate. Em is pretty sensitive and at bday parties she’ll sit separately from the other kids cause she’s afraid crumbs from their cake will get into what she is eating and make her sick 😦 We got invited to one bday party recently where the mom went out and bought a GF flourless cake cause she knew Em was coming (and everything else was GF too!!). I almost burst into tears — it’s the first time since her diagnosis that she didn’t feel self-conscius at a party.

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  16. I am 28 years old and have never had a normal life… since infantcy I have always had stomach issues and as a young child I was diagnosed as lactose intolerant. I still had stomach pains and constant issues with adjusting my entire day around the bathroom even after dairy was omited from my diet. I was even hospitalized sometimes for days on end for stomach pains that noone could understand. I have had many doctors tell me they didnt know what was wrong with me until recently. Three weeks ago i was put on a gf diet and already I have noticed a drastic change in my quality of life! I went back to the doctor and she diagnosised me with celiac desease. So im starting to get this whole thing down with one exception. I also have a blood mutation called factor 5 lieden (clotting disorder). and now to follow all three diets at the same time feels like its killing me. No Gluten, No Dairy, No Green or Leafy Veggies (vitiman K) i have been living off of almonds, walnuts, dried cranberries and chicken for the past three weeks and i am in need of some ideas .. if anyone has any please give me the low down cause im starting to go crazy! thankfully I am the only one in the house who has to eat like this so my sons and husband eat the normal food they love .. but finding different ideas for what i can do is more difficult then i ever thought it would be.

    • Wow Athen I am so sorry and I totally understand. I have celiac and the dairy thing….IT SUCKS!! The celiac was hard but I figured it out, now the dairy thing totally messed me up cause I was living on cheese and yogurt, pudding……mostly it pissed me off to be honest! LOL Then to not be able to have green vegies either would really make me want to have melt down. So I put my brain to work this morning (yea it’s on vacation most the time) and I came up with a few suggestions for you……what about: cauliflower (there are some really good recipes for cauliflower wraps, mashed like potatoes, in a stir fry with meat and gluten free soy sauce over rice.
      squash…summer…spaghetti…butternut (so yummy with butter salt and pepper) around my area they even put brown sugar on it. Yuck! but you might like it.
      Carrots: grated like a salad or cooked with your meat.
      Cabbage: (not sure if this one is considered dark green) but I cut it up and add it to a pan of fried bacon pieces with salt and pepper…oh it’s divine.:) or make cabage wraps (google it also really yummy).
      I have found a gazillion recipes with peanut butter (to the point I’m sick of it) but…..there are pb cookies, so simple, 1 cup pb, 1 cup brown sugar, one egg with a tsp of baking soday. Bake 350 for 8 min. let sit for 5 min to finish setting and …TADA also pb no bake rolls and fudge made with cocomut oil…..which i”m lucky to even get a piece of due to my family.
      Good luck!! I have faith you will figure it out. 🙂

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  18. My daughter is 10, and we found out that both she and my husband have celiac last summer. Mark feels incredibly guilty that she has it, as if it’s his fault, but the good thing is that we were able to figure out what was going on after only a few months of symptoms (though she’s always had a sensitive stomach.) Hubs on the other hand, had fifteen years of diarrhea and tests, and doctors saying “IBS, I guess.” before we figured it out. There are blessings in an early diagnosis. Still sucks though….

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