6 Tips For Parents of a Celiac Child

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Dear Parent, are you overwhelmed with your child’s Celiac diagnosis? While doctors may tell you what gluten is, they don’t always tell you how to navigate this lifestyle. Today I’m offering 6 gentle reminders for this journey. 

Who Am I to Give Parenting Advice? 

I have no children. Therefore it may seem odd that I’m writing a post trying to encourage parents. I have, however, listened to many parents with concerns and burdened hearts. In addition, I’ve been blessed to run a gluten free camp, and see firsthand how children have thrived and grown despite their Celiac Disease diagnosis. 

Living with Celiac Disease is a fine line between trying to get people to take our health seriously, while also not allowing it to hold us back from living a full life. It’s hard enough as an adult, and even harder to explain to our children. Hopefully this post can encourage you and your kids that a gluten free life can be a good, eventful life. 

Dear Celiac Parent, it's not your fault

Dear Celiac Parent, this is not your fault.

Celiac Disease is genetic. And often I see parents who feel guilty, awful that they passed on this disease to their child. And while I can’t tell you how to feel, please hear me say that this is NOT your fault. We know 30% of the population carry these genes, but only 1% develop Celiac Disease. We have no idea why I have Celiac Disease, but my sister doesn’t. There is nothing you did to cause this, and nothing you failed to do to prevent it. Be kind to yourself. 

Your Celiac child will thank you

Dear Celiac Parent, one day your child will thank you

Living with Celiac Disease as a child is difficult. It may make them feel anxious and frustrate. They may feel they had to grow up way too fast. But one day, they will thank you for trusting your hunch that something was wrong. That you fought for a diagnosis and never gave up. One day they will understand that by gettting diagnosed young, they avoided years of unexplained symptoms. 

Dear Celiac Parent, mistakes happen

Dear Celiac Parent, you will make mistakes.

Just allow yourself the grace to know this now. You will obviously try your hardest to make sure that your child never ingests gluten. But we’re human. Mistakes happen. And you’ll do all that you can to make your kid feel better. You are not awful or careless. You’re human, and you’re learning. And your child is learning how to react to mistakes by how you handle them. 

teach child how to eat gluten free

Dear Celiac Parent, empower kids to manage their own diet

Parents want to shield their kids from pain. That’s natural. However, at some point, your kids will leave the house. Whether it’s grabbing something to eat with high school friends. Or totally on their own after they graduate. They need to learn how to keep themselves safe, and they need to see that you trust them to make good decisions.

Dear Celiac Parent, it will get easier.

When your child receives a Celiac Disease diagnosis, it can be overwhelming. Removing any and all gluten from one’s diet is no quick and simple task. You’ll likely feel overwhelmed. Not sure who to trust. But with time, you will. You will become a better gluten free chef and baker. Your kid will find gluten free products they love. It. Does. Get Better.

inclusion doesn't always mean same

Dear Celiac Parent, being included doesn’t have to mean “same.”

Unfortunately, there are times where our kids won’t be able to eat the same things as every one else. Sometimes that means we bring a treat. Or do something special at home. My friend, whose two daughters have Celiac Disease said, “They won’t always have the same food. As long as they enjoy the food they are having; that’s all that matters.” Ask your child what inclusion means to them. 

Other helpful resources for parents whose children have Celiac Disease

Do you have a child with Celiac Disease? What would you tell a fellow parent?
What encouragement do you wish was shared with you at the time of their diagnosis?

Originally Published May 2022

9 Comments

  1. First I want to thank MI Gluten Free Gal for being such a great resource! This was great information for parents with children that have celiac or gluten intolerance. I have celiac disease and I wish I had been diagnosed sooner. I have four children whom are adults now, but for years two of my children had so many sympotms and health issues. I cannot even explain what we went through to get some type of diagnosis. After many years we found out they have EoE (Eosinophilic esophagitis ) which also requires them to eat gluten free. I often wonder if I had gotten diagnosed earlier if this would have helped my children. We know many of these esophagitis diseases are genetic. Mom guilt is real! But… be so happy your child is being diagnosed and you can help him or her with the best knowledge on how to take care of their health. There are so many resources now and great information on foods to purchase and make so you all can enjoy eating safe and healthy! Good wishes to you!

    1. Dear Mary,
      Thank you so much for sharing this insight. I to wish I had had been diagnosed sooner. I definitely had symptoms when I was in high school, and I struggled physically when I was in college. I know some people may think that their child’s Celiac Disease diagnosis may steal their kid’s childhood. But I can definitely saying being undiagnosed, and living with symptoms throughout my childhood, was equally as hard.

      1. Thank you for this perspective. My daughters were diagnosed at 6 and 3. There’s definitely a loss of innocence and I sometimes wonder if I should have waited to push for a diagnosis. Then I think I’m crazy for thinking that. It’s helpful to know that other parents feel that same guilt AND hear the reassurance that early diagnosis is in fact better (of course I know that but mom guilt is so strong!).

        1. Mom guilt is a real thing. But we know so much about how malnutrition hampers further growth. The sooner we can catch it, the better our health will be, long term. And hopefully fewer missed school days due to illness, which means a better educational foundation. You’re doing great, mom! <3

        2. Kelly, Thank you for saying this! My son is 6 – just diagnosed last week. (He has no symptoms, but is Type 1 Diabetic so they screen regularly). I keep thinking “I wish we just didn’t know he has it! I wish we had more time so he could have a more normal childhood.” You’re comment makes me see I’m not terrible for thinking this, BUT it is TRULY BETTER to have an early diagnosis.

        3. Omg! My 13 year old son was just diagnosed with celiacs and then subsequently I was, and I have had the same thought of wishing I didn’t know. So hard and overwhelming but thank you for the uplifting article

  2. At first I felt guilty that my then 6 year old was diagnosed with celiac about 6 months after my diagnosis. So guilty. Then it gave me a new reason to accept my diagnosis (which I was struggling with) in order to be the mama bear that he would need to navigate the GF waters, especially out and about. He never missed a beat and took it all in stride, now we are restaurant buddies that always sit and order together. I would never wish any of my kids had celiac but I never realized how much it would benefit us both that we have each other through the process of celiac life. The guilt went away when I turned it into action trying to teach myself and my son (and everyone else I know it seems 🤣) how to live a healthy life.

    1. I love hearing how this has helped the two of you bond. My father also had Celiac Disease, and we loved being able to share recipes and new products with each other. I definitely deepened our bond.

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