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Things I Wish Someone Had Told Me About Having a Child with Special Dietary Needs

Things I Wish Someone had told me About Having a Child With Special Dietary Needs

We found out our daughter could not have corn, and it rocked our world.

It was everywhere. Even in our corn syrup free household we found many instances of it. It was in our vanilla, baking powder, canned tomatoes, mustards, balsamic vinegar, toothpaste…

That was three years ago. Three very full years. Ones with hard lessons learned, tears shed, and now 24 foods added to her no-no list plus another daughter born who also has allergies.

I know I am not the only one on this path, so I wanted to share some of the things I have learned (and re-learned multiple times) over the years. Things I wish I had known from the beginning!

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You’re Not Alone.

So, you find out your child can’t have X, Y, Z (and every other letter but M), and it is overwhelming. An important part of fellowshipping (breaking bread) and day to day life (cooking, budgeting) are thoroughly rocked. It effects every part of your life, and it can feel pretty lonely.

But, I am not the only person to have walked this path, and neither are you. Your specific story might be different, but there are people who (at least somewhat) understand.

Even if you don’t know anyone in person who deals with food allergies and/or restrictions there are online support groups which are a blessing! Talking to people who have been there done that is the best feeling.

I can’t tell you how relieved I was when I found out other reasons allergy moms have cried in their pursuit of feeding kids. My tears over that stupid egg/nut/dairy/coconut/starch/cane sugar/honey free sweet potato pie flop last year seemed less crazy then!

emergency meals

Find Your Emergency Meals.

Some of the most disheartening advice I ever received was to serve pb & j (or other typical emergency meals) on “those days” – the kind where nothing goes right. None of the example meals given we were able to have.

But, in hindsight it is still good advice. Life happens, mistakes happen, emergency room trips happen, and everyone still wants to be fed.

So, we find a few emergency meals that work for us (such as the sweet potato skillet pictured) and fall back on them when everything else is going wrong.

Grace, Mommy, Grace

There are so many good things to do.  There are crafts, decor, housekeeping, green living, acts of service,  study, quiet times, fitness, healthy living things to do. Good things.

There are but so many hours in a day though. Limited times means limited activities. Give yourself grace, regardless of your story.

If you need to cook every little thing from scratch and allergy free, spend hours trying to find sources of food you can have, and take 2-3 things to any potluck or church service, then an extra scoop of grace just might be warranted!

k.i.s.s.

Keep It Simple Sweetheart.

I stress, I worry, and I fret. I must give my kids special foods. All these restrictions are no excuse to not pass down the foods I grew up with or that they see other children eating.

All kids need crackers, don’t they?

Then, I give my kids a medjool date or fruit frozen on a stick and they dance with excitement. Most of the time the over-complicating it is for my benefit, not theirs.

I do go the extra step occasionally, much to their and my delight. But they are usually baby steps. Juice or fruit to color things naturally, or using cookie cutters for shapes.

It’s Hard For Others to Understand.

Remember how I said you aren’t alone? It’s true; however, there are so many people out there that don’t understand, so give them grace.

Before allergies, there were many times where I simply did not understand, and even made hurtful comments in my ignorance and/or thoughtlessness.

I am saddened to say, I thought the mom who came during snack time at VBS was a worrywart, and otherwise strange.

I have also been hurt in the midst of food allergy stuff.

Assumptions about what caused her to react to foods, the smaller ones not worth avoiding (though they hurt my little girl), and even a few times people not wanting food I offered due to it being “strange”.

Honestly, most of the hurtful comments and situations could have been avoided with a bit of empathatic thinking.

Still, I need to remember they haven’t been where I have been.

They haven’t had the sleepless nights with my crying children, or need to cook around the restrictions I do, so the food is foreign to them. So, grace and love and forgiveness and trying to remember how hard it is to understand it is.

Things I Wish Someone had told me About Having a Child With Special Dietary NeedsCelebrate What You Can Eat.

This is probably the biggest one!

With all of our restrictions there still is a beautiful array of foods we can have, and enjoy. Colorful, fresh, beautiful foods.

Foods that show God’s handiwork in their bright beautiful array of colors and textures!

Quality ingredients that are respected and handled well is the secret to good food no matter what restrictions you are working around. So, celebrate them and enjoy them!

Do you have a child with special dietary needs (or have them yourself)? What are some things you struggle with that? What are some things you’ve learned?
Unless otherwise credited, photos are owned by the author or used with a license from Canva or Deposit Photos.

25 thoughts on “Things I Wish Someone Had Told Me About Having a Child with Special Dietary Needs”

  1. Just wanted to let you know that my corn allergic child just turned 21. He was born in 1994 and when he reacted to a hypoallergenic formula my pediatrician knew what it was. Turned out my mother had been told she had a terrible reaction to corn and she’d ignored it. My son knows all about his allergies and often ignores it, but I have accepted that it is his life and his choice. So they can survive to grow up. It was much more difficult back then, I think, as most people thought I was a nutcase, although when a child died of a peanut allergy at our preschool because a mom ignored the 4 year old’s protest that she couldn’t eat that, attitudes began to change. {A cousin told me after my son’s diagnosis that her allergies went crazy when she shucked corn. I gaped at her and asked why she’d never considered that she shouldn’t eat it. It was just not something we thought about when she was born in 1969.}

      1. I couldn’t even imagine. How absolutely terrible 🙁

        I am glad they are more recognized now, but we still have some ways to go.

        I’ve had my snack instructions ignored by childcare workers. One gave her a jelly filled donut when she was a toddler. If Natalai’s corn or gluten allergy was anaphylexic, she would at the very least been hospitalized.

  2. I came across this post totally randomly, looking for a recipe, but it really resonated with me. In my case, *I* am the one with multiple food allergies. I’ve been dealing with them my whole life, so it’s my normal, but it was very hard when I was tiny.
    My first allergies were to corn, chocolate/caffeine, and red dye. In the early 80’s (and still today, although a little less so) there were almost NO kid-oriented foods that didn’t contain one of those. I remember doing the elimination diet in daycare, and not being to “paint” with pudding like the other kids. Then there was my 7th birthday party where the venue gave me a chocolate cake. (I was DEVASTATED!) Fortunately, though, I had good friends with understanding parents who would make sure there were things I could have at birthday parties, Girl Scouts, etc.
    Now I’m grown and cooking for myself. It’s still hard, but reading labels is second nature and there are a lot more allergy-free options. For instance, I’m allergic to egg yolks, but I can have the whites, so I use Egg Beaters in cooking and baking. I’ve also gotten over my fear of being “different” or “weird” and have no problems asking for my food to be prepared specially when I eat out. I’ve found restaurants are much more aware of and sensitive to food allergies now, which helps. It doesn’t necessarily get easier, but it’s definitely doable.

    1. Oh no! That cake would be so disappointing! I have adult unset allergies, and while I only have a few (egg, which isn’t too severe, and tree nuts which is more so) but, those two still seem to be everywhere. We just moved to Maryland and I really want to try a crab cake as they are EVERYWHERE, and a very popular dish here.

      I need to be braver in going out to eat and asking questions. A few times they restaurants were even able to accommodate my daughter (I brought food for her, but it was enough and the waitress and I talked back and forth until we realized they had fresh apples they could slice her).

      Also, my daughter pictured can have egg whites but not egg yolks, here I thought that was very unique to her.

  3. Thank you for your post. We don’t fall into the allergy category but my daughter is on a very special diet. She is 10 and developed seizures this summer that are not controlled by medicine. What worked? A high fat, moderate protein, low carb and no sugar.

    We are a family of six kids and so we have changed everyone’s diet to be similar to my daughter’s. She still has a lot of anger and frustration over the foods she can’t have and seizures she now has. Since everything bite she eats has to be measured we do not eat out anymore. And since so many artificial sweeteners cause seizures those are out. I can’t tell you the times I have asked for the nutritional label on something and been told they don’t have it.

    Thank You for your post. I needed to read it.

    1. That must be hard changing diet at 10. Old enough to really miss foods, but still young. Is it the ketogenic diet by any chance? I am just curious as I know those help with seizures. I’ll be praying for you. Two of my sisters have had struggles with seizures (one grew out of it, but one still struggles) so I know they can be scary.

    2. Cirrie,
      Such a tough transition for everyone, mama included! 🙁 My heart goes out to you and your daughter and family, may God bless you all with a sense of peace, and may the whole family’s health benefit so much from the changes that in hindsight you view this challenge as a blessing in disguise. Hugs, Katie

  4. My daughter couldn’t have any dairy for 5 months and those were some of the hardest months of her and our lives finding this she liked and could eat safely. She was tested and it came back that she was severely allergic to peanuts and treenuts though we have to stay away from all nuts to be safe. This time its a lot easier but we have had play dates where people have brought peanut butter toast and its really hard as they just don’t understand how hard it is. I have now found two groups where there are mostly nut allergies but also some other ones and its great to find people how hard things can be.

  5. Great post, Debra! I too have 3 kids with allergies. It is hard.

    I thought you might enjoy this post I wrote a while back about the emotional part.

    http://homemadedutchapplepie.com/2014/10/its-just-food-taking-the-emotions-out-of-eating.html

    (and nice to “meet” you as a fellow contributor!)

    1. Hi Mary, nice to meet you too!

      Oh, that post resignated with me. Since food is everywhere it is tied to so many memories, and I feel bad feeling like I can’t those down to my child. But, I am pretty sure she won’t remember the fact that we didn’t make the muffins I remember making with my grandmother and will have happy memories making cantaloupe “pops” with me. I have to remember to her this is her normal, and the emotional struggles are mostly mine.

  6. Thank you for this post today. We have been living in the world of restricted diets for a year and a half with my SIBO son. You are so right about isolation. My son’s restrictions don’t fit into a particular “diet,” so finding support is hard. (Egg-free, dairy-free, legume-free GAPS? Starch-free AIP plus nuts?) And he’s so young (2 1/2 when we started this journey), and his symptoms are hidden from most of the world, so we deal with a lot of criticism. Sometimes I get mad that I have to be the weird parent that brings our own food to the birthday parties. And I do put so much pressure on myself to make our own marshmallows, graham crackers, and chocolate so that he can have s’mores with the rest of the kids. It’s good to be reminded that we are not alone, it’s ok to keep things simple, and there is much to be thankful for.

    1. I get mad too… social functions are so hard! Sometimes if I feel she would feel too isolated we skip a function and I hate that. Still trying to decide if I want to face a pizza party. Wow… that was encouraging. 😛

      Support groups for so many allergies don’t really exist (have you heard of “GAPS Kids” on facebook I LOVE that one) I always get advice that overlaps with something she can’t have. But, there are still people who can encourage me. Even if no one can supply specific recipes, there are people there who get it.

  7. Our son was diagnosed with EoE (eosinophilic esophagitis) 9 months ago, when he was not quite 2 1/2, and it rocked our world. His current diet restrictions are no gluten, rice, soy, dairy, eggs, beef, chicken, pork, fish, peanuts, tree nuts, green beans, bananas, plantains, yeast, vinegar, or cocoa. Thank you for this sweet article, especially the reminder to give ourselves grace and to celebrate what our child CAN eat. It’s been a long, hard 9 months. It’s comforting to know that others have been there or are there right now, struggling along with us. I think the hardest thing for us so far has been how much time it requires to keep up with his diet. It’s like another job, and it’s exhausting. But then, when I have small successes, such as the tortillas I made for him the other night that he and everyone else in the family loved, it’s so exciting and empowering to think, hey, I can do this! 🙂

    1. Kara, yes, it takes forever. I can completely feel you on that one! We are doing everything we can possibly find to save a few seconds here and there throughout the day as I try and figure out how to keep up with everything.

      Oh, I know that excitement when you figure out something. I just figured out a curry everyone enjoys that is coconut, traditional sweetener, and grain free (she is on GAPS diet). Oh the joy! Or finding a few snacks I could buy instead of make.

      I guess you eat a lot of turkey and lamb?

  8. What are some online support groups? Would love to know! Definitely feel lonely in the multiple allergies category. Thanks!

    1. Debra @ Worth Cooking

      My favorite one is called “GAPS Kids” on facebook (but, it is specifically for kids on the GAPS diet, so much understanding!), I also belong to a local to me one. I would search your area and allergy on facebook.

  9. This article was good. I never expected to have a kid with food allergies, but man, does it change things. I never thought it could take so long to grocery shop. To make dinner. To pick a restaurant. Who Google searches restaurants to figure out which one has at least ONE THING on the menu your kid can eat? Me, that’s who. And bless her, she’s two. How’s she supposed to know which cookie, which bread, which veggies are safe? So we watch. every. bite. and yes, give grace when we miss a few. But holding her at night when her eczema is bad and she just can’t stop scratching breaks my heart. She looks for all the world like she’s asleep, except her knees are bent, her hands are moving, and the sandpaper sound just doesn’t quit. Until it does, and you wonder if its safe to move and how long she’ll be asleep… and how fast you can go to sleep because sleeping through the night isn’t a guarantee. And then you go back online and research some more. Is that cream safe, or is it going to harm her in some way down the road? Is there a fix? Is there something I didn’t know about that could calm the itching? Did I miss something she ate, or does she have another allergy or intolerance that we just didn’t know about? If I pray harder, will it go away? Deep breaths. We’re not alone. Other folks do this too. And yes, maybe one day she’ll outgrow it, or something will give, or work, or change.

    1. Debra @ Worth Cooking

      Laura, I cried reading this because it brought back so many memories! My baby trying to relax while nursing but scratching and jerking. Our youngest is two and I can understand watching EVERY SINGLE BITE. Thankfully that aspect seems to get easier when they get older (our four year old knows what she can and can’t eat now, sadly though she sometimes sneaks and pays a price no four year old should have to pay for sneaking food 🙁 )

    2. hello laura, is your daughter gluten free now or not,also if you give her some animal meat any kind ,about a half hour to an hour before she have it give her an equal amount of organic high alkaline fruit like banana,organic apricot, also check dr tent on you tube, I read recently that a lot of herbs and teas are contaminated with toxic material,also I read that brown rice products are high in arsinec

  10. We can relate to your painful period of discovery re: allergies. One of our littles is allergic to egg. SO many snacks in SO many places involve some form of egg (every baked good imaginable, it seems). We have learned to send alternative snacks along and she has shown remarkable self control. Just today she told me it wasn’t fair that she had allergies when her older brother doesn’t, but focusing her on the blessings she has helped. Sure, she might have a difficult allergy, but she does have arms, legs, fingers and toes, she can see and hear, smell and taste, and there are other children who do not and cannot. Even in this we are blessed.

    1. Claire,
      We are thinking my 9mo may be allergic to egg, and I waffling between being so sad and angry and feeling grateful that I can be empathetic with all my readers with kids with food allergies…sigh. He threw up yesterday just because I shared a straw with him while I was eating egg, so it seems it may be a pretty serious one. 🙁 Katie

    2. Debra @ Worth Cooking

      Claire, yes, eggs are a hard one. I remember thinking “as long as eggs are fine” I can cook around any allergies! But, slowly but surely we have learned how to do it. My oldest does not have allergies, and it is a hard balance sometimes letting him eat things and not having her feel left out/like it is unfair.

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