Celiac Rant: Stop Pitying My Child's Diet and Let's Rejoice!

dont pity celiac disease

I love this. I really, really love this. It’s a celiac rant with a positive spin.

Because our disease is connected to food, it’s the food that tends to get all of the focus. Food is sexy I guess; disease…not so much.

But the conversation needs to be about the disease.

Believe it or not, as much as it can be a gigantic pain in the butt, not eating gluten is the easiest thing about celiac disease. It’s all the other crap that goes along with our disease that makes it challenging to live with.

So this mom’s rant is spot on.

We’re not deprived. We’re not missing out on life. We have an autoimmune disease and we are doing what we have to do to stay alive.

So please don’t pity us because we can’t have bread. Honestly…it’s the least of our worries.

Here’s her awesome rant…

My husband (who has celiac) referred me to your page today for a completely different post and now I have spent 2 hours reading rants. We have been gluten free as a family for almost a year — I have so many pent up rants I don’t know where to start.

My son has celiac. He is almost three. We found out when he stopped growing and had persistent diarrhea.

His growth chart is less smooth curve and more flat line followed by a spike. After almost a year and keeping a photo of his growth chart on my phone as a visual aid (better than the alternative visual aids) I still feel like people think I’m the crazy mother that takes things too seriously. I can never tell if that look of pity that follows when I intercept the bag of chocolates headed towards my son at his cousin’s birthday party is because he can’t eat the treats or because crazy mom won’t let him.

I wonder if people actually think I do this for fun sometimes. A little won’t hurt him. Why would there be gluten in chocolate? What happens when he eats gluten again? What CAN he eat?

I spend so much time just explaining this disease and educating and trying my hardest not to clock those stupid pity faces. Its tiring.

Meanwhile I feel as though my son gets lost in his label sometimes. He’s the one with the special diet. That has special snacks and special bread. He’s the two year old that knows how to say “gwooten fwee”. He’s the boy that doesn’t get to eat cupcakes with everyone else and whose mom is always helicoptering around him while he eats with other kids.

It would be great if they would see all the positive that come with his “special diet”. That spike on his growth chart. His smile. His outgoing nature. The boundless energy he has found. The color in his cheeks. The adorable way he says “gwooten fwee”.

I guess what I am raging against the most is that folks are raining on our parade. It’s hard enough having to tell him no he can’t eat this or that, helplessly trying to comfort him when he gets glutened, worrying about what he can eat when we go out and how he will survive sleep overs and kindergarten.

It would be nice if people would stop pitying his diet and rejoice with me in all it does for him.

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47 thoughts on “Celiac Rant: Stop Pitying My Child's Diet and Let's Rejoice!”

  1. I so get this. My son is six and has been diagnosed with Celiac Disease two years now. I’ve spent a lot of time and energy educating people as well. By now my friends mostly get it. It’s tough though. My son also can’t have dairy or white sugar so he brings his own food everywhere. I’ve become quite the baker! I can tell you that if you involve him and keep things positive with your little guy it will get easier. You’ll worry less. Don’t ever apologize for being ‘helicoptery’. For now, at least, you do have to be near him around food. Hardest job ever. Hang in there mama!

  2. Keep on there Mama! Food allergy/celiac parents ALL understand the constant campaign we raise, we ALL understand the constant vigilance it takes to keep our kids safe. So you keep it up, and don’t worry what others think, we’re all here to support you!

  3. You have to be a helicopter until he is old enough to take his own stand – never apologize for that.

    As for the rest, well happens to us all, all our lives. Just need to let it roll off you, easier said than done, but there will always be well meaning people around who step on your toes so to speak – and at times they will hurt.

    I think we all get it and you can sum it up in one sentence – “A little bit of positive goes a long way” Hang onto that thought, and try to provide the positive yourself whenever you can. Hugs.

    Joanna

  4. Yes, for SURE the hardest part about it is trying to communicate with people who don’t understand. I totally agree–not eating bread/pasta/gluten is an easy thing to do when you have years of chronic symptoms–and people just don’t get this AT ALL. And people also have this TERRIBLE habit of reminding you over and over again about all the food you can’t eat and how hard it is. (When it is not actually that hard to do because you don’t miss this toxic for you food except when they are telling you over and over again abou it.)I have a 8 year old who is celiac/gluten/dairy free and a 12 year old who is celiac/gluten free. We have all been gluten free for 7 years now and my kids now choose to just go places/parties etc and enjoy the company and skip the food to avoid it being an issue. And to avoid the conversation you describe. Which means, miraculously, no more hovering–at least at parties. They eat a big meal before and my daughter always has gum and tic tacs with her just so she has something to eat. It’s not the choice every kid would make but it’s the way they choose to avoid this kind of discussion. But, I agree, people not being kind and not being supportive make it so much harder.

  5. Ha, ha, ha, ha!!!! “Helicoptering around him!” That is just too funny! Mom, we are the ONLY people that are going to advocate for our children…the ONLY people! Deal with the stupidity until he can advocate for himself! Joanna hit the nail on the head regarding that!!!!!
    You are being a fantastic Mommy!!! That’s all that matters! If it wasn’t you dealing with THIS kind of stupidity it would be some OTHER kind of stupidity!!! LOL! My husband STILL hovers around me when we are out! “Hey…what are the ingredients in that?” He is just too cute like that!
    Good luck and happy Gwooten Fwee eating!!!!

  6. I think its harder for parents than it is for the kids most of the time. My son and wife have Celiac and my son takes it all in stride now. This is all he knows… my wife and I have a much harder time with it than he does.

  7. I think I might have to adopt the growth chart image for my phone. Seriously… that is all I need to put a smile on my face and to remember that only those that are educated, get it. The rest won’t understand while the GF “Fad Diet” loses momentum, celebrities find a new way to shed their unwanted weight (while we celebrate our children gaining weight), and there is more information about celiac and NCGS in health class and in restaurant training! (weird stretch, right?)

  8. Yes!!! This!!! While I hate that my son will have to deal with those type comments and that mindset, I am grateful that through my own issues I was able to connect the dots for him and that he will hopefully be much healthier than I was as a kid. He’s already grown two inches since his 2nd birthday in November, his sleeping habits have improved, and his bathroom issues are all but gone. I am learning to cook everything I’ve always loved gluten free and will make sure that he – and the rest of my family – never feels deprived. Agreed that the diet is the easiest part of this disease, it’s most exhausting trying to explain it to everyone else all the time. But even that beats being sick so you have to keep looking for the silver lining! Great post!

  9. Just a note of encouragement that I feel it does get easier the older the kids get. I have three kids (13,11,8) and it is probably easier for the 13 year old because he knows how if feels to be glutened. He does have to constantly say no to food, teachers bring in food for rewards at school and he always has say he has an “allergy”. On the upside, his teachers usually have some sort of prize or candy he can eat (he knows how to read labels just as good as me!!) It is still hard on my 8 year old because she doesn’t have symptoms and kids want to trade lunch at school. I leave treats with her teacher for in-class parties. My 11 year old doesn’t have a problem saying no and his classmates are old enough to understand that he can’t have their food (he doesn’t read labels, he just prefers to say no). Good luck to you and know that there are other families just like yours ๐Ÿ™‚

  10. Giant kudos to all the parents of celiac kiddos for keeping them safe and for empowering them to handle their “gluten freeness” with courage and
    wisdom. They will never be afraid to talk about this with others and they will always be firm in their resolve to stay healthy!

    We are so much more than our food.

    Maybe we need some tee shirts that say:

    “Meh, who needs bread?” and on the back

    “I’m Gwooten Fwee and I’m Pwoud”

    I would SO wear that shirt..

    Many blessings to all your families!

    1. Sign me up for that shirt in red my favorite color!!! I would wear it proud just like my T-Shirts with Pitbull dogs on them. Celiacs and Pitbulls get no respect. Lets knock em dead!!!

      1. I’d buy that shirt, too! (Could totally see it in a onesie, tooโ€”not for me, of course.)

        I think the bottom line is that the diet is the best thing we can do for our own health, and your son is sure to thank you for getting him off to a good start on it. Hopefully, with time, people will stop making a fuss over it and it will just become the way things are.

        Plus (and I know this is one of those annoying things that people say to us when they don’t get it, but it’s also true) there are so, so many GF food options available now compared to in the past. I’ve seen breads that look just like the one in the photo at certain GF bakeries and blogs. It’s doable! As are so many other foods. (This is actually what I posted about today on my own blog: the sheer magnitude of gluten-free food products available and how they compare with their non-gluten-free counterpartsโ€”GD, let me know if it’s OK to post a link).

            1. Hehe, Irish! I’m feeling sensitive to the idea of over-promoting anything gluten-free, including my own blog, after staring at so many GF product descriptions to write that post!

            1. Excellent article, BTW ๐Ÿ˜‰
              One of my fave lines:
              “Youโ€™d think someone could take a break from dinosaur-shaped extruded meat to manufacture some GF phyllo dough”.

              Amen, sistah!

  11. This really hits home for me. I’ve caught myself saying multiple times in the last month that it is no trouble for me to bring my own food. I’ve been invited to several dinner meetings through the organizations I volunteer with and people want to cook something special for my special needs so they can feel good about me being included. I have to convince them that I am happiest when I cook and bring my own food. Sometimes it helps them relax if i ask what they are serving and offer to bring myself the same thing in a “safe” form for me to consume. It makes them feel less uncomfortable about me eating my own food than when I prepare one of my favorite foods that is completely different than what everyone else is eating. Whatever… the less I have to talk about my special food the happier I am.

  12. My daughter and I were diagnosed celiac a long time ago. Keep on helicoptering mama until he grows his own blades and soars. It is no different from any parenting. You don’t have to care what anyone else thinks of what you do, you are trying to raise a great human being. We always talk about reasons why we are lucky to have been diagnosed celiac. It’s a disease we don’t have to take medicine for, we are much healthier than we were before gluten, we became gourmet cooks, we don’t eat a bunch of junk food crap like most people seem to, at holidays we don’t gain a ton of weight because we can’t eat all the junk at the office or parties. etc etc. etc. Many years ago I used to attend a celiac support group at a hospital wellness center. Other groups such as cancer, MS etc met there also. At one point they told us that our celiac group needed to find a new place to meet. Why? Because we were too happy, brought GF cake, had a party every month, and were disturbing the sick people. They thought we must not really have a disease! We went somewhere else and partied.

  13. I don’t feel sorry for myself so neither should anyone else! A coworker at work asked me how long I had to be on the diet. When I replied “for the rest of my life”, he looked at me and said “I could not date someone like you”. I would not date you either.

      1. My hubs went GF with me (I did not ask) and I am eternally grateful.

        A member on celiac.com (a brilliant woman named Skylark) came up with this priceless thought.

        “Having Celiac is the ultimate “jerk-0-meter” ๐Ÿ™‚

        because if someone does not ‘get you’ or rejects you because of your
        G F diet, well, now you know the type of person s/he really is and maybe you are better off without them in your life.

        Amen.

  14. I do not have a child, but focusing on the positive is what got ( ok gets ) me through it. When I watch the hubby with his foamy beer I enjoy my martini and remind myself how good I feel ( hmm, maybe that is the vodka talking). But I really did feel so horrible and miserable that changing my food habits really is a small price to pay.

    Gwooten Fwee is for me.

  15. This post is amazing! I don’t know about you, but sometimes we go through life trying to fit it, and then we have this disease that does exactly the opposite… We become the odd ones out. I wish my family and friends were that understanding and protective of my diet. And like you mentioned, that instead they see the upbeat part of me, the one that doesn’t cry or get depressed for (apparently) no reason at all, whose hair doesn’t look dull or falls out, who’s not tired and cranky all the time, that doesn’t grill the hosts at parties or waiters at restaurants, who has to settle with a plain salad with no dressing even when starving, the one that doesn’t feel like herself when glutened… Sometimes I feel like they’re the ones that feel more awkward than me in these situations. ๐Ÿ™

  16. I’m so glad I’m not alone! I love coming on this site and reading these rants! it helps me prepare for the fun and long road ahead. My six year old daughter was recently diagnosed with Celiac Disease, and when I say recently I mean like 2 hours ago. Her GI doctor called me with results saying her Biopsy shows Celiac. We knew it, but I guess I didn’t want to hear it. Now that I know for sure she is, I can’t wait to get her started on a GF diet!! I’m actually kind of excited for the challenge, but I’m more excited for the outcome.

    Valentines Day is coming up, and of course her class will be having a party…..any suggestions of what I can do to make her feel included during this event?

    1. There are plenty of GF candies she can have and share with her friends and classmates and GF cupcakes you can make, cookies, etc. This is not an exclusionary diagnosis by any means, I promise you!
      She is going to be okay….and you will be, too. ๐Ÿ™‚

      There are so many resources for you and we will all help.

      Start here:

      http://www.glutenfree4kids.com/

      and KA makes awesome brownie and cookie mixes

      and

      http://celiacdisease.about.com/od/glutenfreefoodshopping/a/GFcandies.htm

  17. As someone who loves to cook, but does not have Celiac’s, I’d like to throw in some input from the other camp. One of my really close friends has Celiac and multiple other food allergies. She was uncomfortable in coming over for dinner, but I wanted to cook for her. I ended up making a fabulous meal, so much that she asked for all of the recipes. PLEASE! Help educate us instead of ranting about how we don’t get it. Not all of us understand the ins and outs of gluten free, but we do want to learn. There is no pity-there is a desire for many of us to understand and be able to help our community, our neighbors, and our friends. Do not reject our attempts to help and be a part of your lives.

    1. You rock! ! I am so lucky to have friends who are like you! Most people try to be helpful but don’t totally get how gluten pains us so. Your friend is lucky to have you! Rock on!

    2. Jen A
      Good for you for being a most excellent friend!
      I am fortunate to have friends like you in my life.

      It does not take that much to learn how to cook safely for a celiac.
      A flexible cutting board dedicated to prep work when she comes for dinner is a good start.
      Plain, whole foods are naturally gluten free and the internet is filled with
      recipes.
      If in doubt, just ask us if you are unsure about an ingredient.
      I help with dinner prep (while we enjoy a glass of Proseco ๐Ÿ™‚ )
      so there is no worry–on anyone’s part.
      I bring dessert and/or appetizers so she can focus on dinner prep.
      Other friends asked to borrow a pan from me because they were concerned. Even though it was not necessary, it told me they cared.
      One pal stood in the freezer section reading labels for a half hour.
      I could have just told him the Haagen Das vanilla was okay, but he said he wanted to learn. lol
      As my chef friend has said “it’s mostly common sense to figure it out” but she willingly read this information to learn a bit more:

      http://www.todaysdietitian.com/newarchives/100713p16.shtml

      P.S. I’d like to add that most of us are not continuous “ranters”, okay?
      lol Occasional ranting is allowed when you are frustrated, yes, but this word has acquired a bad connotation, IMHO. Most of us do not have any expectations to begin with nor do we think people aren’t willing to learn.I do not think I am “owed anything” just because I have celiac, but in my experience, I have been met with acceptance and genuine attempts to understand what celiac is and how they can accommodate me when I am a guest in their homes (in restaurants, and even at weddings, etc.)
      Most people are really willing to learn, IMHO.

  18. I seriously agree with this. My big thing is, why is wheat the norm? Why is EVERYTHING tainted with wheat? Barley and Rye are so much easier to avoid, but everything from candy to seasoning on meats has a wheat derivative.

    My rice bread isn’t “fake bread” it’s just bread. My crackers aren’t “fake crackers”. It’s like wheat is the norm, and everything else is a cheap knock off. Plus, all the natural, whole foods that SHOULD be gluten free are labeled now…which really gets my goat. Why do you need to label my APPLE JUICE gluten free? It should be gluten free already, if it’s made by a sane person.

    Lets start labeling everything that has gluten in it with a big ‘THIS CONTAINS GLUTEN” warning, instead of labeling ALL the things that don’t contain gluten as “Gluten Free!” I think it would shift the dynamic. (I know it isn’t realistic, but it’s just a hypothetical.)

    1. Good for you, Kat! ๐Ÿ™‚

      You are so right…..why does my orange juice have a GF label? No clue.

      I have said many times (and Gemini and GD can attest) that someday very soon, WE will be the “norm” and everyone else will follow.

  19. “I spend so much time just explaining this disease and educating and trying my hardest not to clock those stupid pity faces. Its tiring.”

    I JUST LOVE THIS WOMAN!

    This is my biggest bitch in 9 years gluten free. I never had a problem being diagnosed because dying is not something I planned on doing. Gluten free is easy. Acceptance is easy. But stupid people, pitying me because I can’t eat the bread is obnoxious behavior. I get tired of telling these food-centric morons I don’t care about the cake and I am not upset if they snarf a plateful down in front of me. I am not that fragile. And, yes, clocking them has crossed my mind on more than a few occasions.

    Besides, how can any one not love a 2 year old who says gwooten fwee? He’s already smarter than most of the gluten eating adults out there…….. ; )

  20. I just came across this site and wanted to say that I understand this mom’s fustrations as I still remember the responses I got at first when I needed to go Gwooten Fwee! My quilting friends felt they needed to say I’m sorry for eating my gluten filled food in front of you. I felt like I was always saying that’s OK…it doesn’t bother me to see you eat the food you love. One day I finally told them to stop and just enjoy their food so I could enjoy mine. After that, they started asking me what types of foods could I eat and how could they fix gluten-free so I could join them. We got together once or twice a month to work on our quilts and they were great about learning how to cook/bake gf. One gal even baked me a gf cheese cake for my birthday one year. Now I am retired and live in another part of the country and am invoived with another quilting group and this time it is much easier as there were several others who also must eat gf. The rest are always trying out gf recipes so we have sometime for our snacks/potlucks.

  21. I will be saying Gwooten Fwee for life now. Love it! I teach 2nd grade and one of my favorite kid’s books is HOOWAY FOR WODNEY WAT! A little guy in my class and I are both GF, and neither one of us care about the cupcakes and treats we skip. Sometimes I bring us in a Pamela’s shortbread with a squirt of whipped cream, but most of the time we just pass. We look out for each other!

  22. Kim64 This is turning out to be really, really frustrating I have so many people that say “well your good now right, just get rid of gluten, that’s what I read”” “why would you still get sick you cut out wheat right?” On christmas, host tried so hard to give me gluten free foods. They came with subs, macaroni salad, etc….she had a fruit kabob in my face saying “now c’mon it’s just fruit” I tried to explain and here comes the face that says I don’t know what ur talking about. It’s common place now. So when a friend and co~worker asked why do I get sick……I asked her if I could send her an easy read email about celiac. She couldn’t believe it, and I felt better! Now I have 6to 7 persons I do this. It’s just now and then and I’ll be sending more! I’m so happy to be part of this blog, it has really helped me on so many levels! Thanks Kim

  23. You’re right, it is just so exhausting… all that explaining, all those words, all that educating. Just thinking about it is exhausting!!!

    The journey would be so much easier without all those darn voices questioning and judging and commenting and second guessing and assuming I do this just for attention…. REALLY???

    On the other hand of life with coeliacs and small children…

    We just celebrated our third family “diagnosis day”. Having run the gauntlet of the health industry for years it was such a relief to know the answer to the questions – that we decided to put a positive spin on it for the children. (all have coeliacs, diagnosed at 2,5, 7 plus myself) So on our ‘diagnosis day’, we see our specialist, do our bloods etc and then hit the shops and have a feast. No school. Just a day of cooking and sharing and celebration. We are on the way to good health (very slowly and painfully but still) and we are lucky that we know what the problem is and have the power to help ourselves.

    If I have learned anything in the last three years it is that children who have to think about what they eat have such a wonderful opportunity to explore a world of food – no getting stuck on chips and chicken nuggets…. And they learn profoundly and deeply that the old saying “what you put in is what you get out” is so true.

    The journey with children and food challenges is hard and at times so exhausting, but it is also a lot of fun and thank goodness when all else fails there is still ice cream (even if it is home made coconut milk no sugar version…)

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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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