Celiac Awareness Month: 5 Ways to Support a Child With Celiac Disease

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Celiac Awareness Month: 5 Ways to Support a Child With Celiac Disease

May is Celiac Awareness Month

This is our first year “celebrating” celiac awareness month, since our daughter was diagnosed in the fall. I thought it would be fitting to raise awareness about some lesser-known information.

What is Celiac Disease?

Celiac disease is an autoimmune disorder that requires lifelong elimination of gluten from the diet. In someone with celiac disease, gluten triggers an immune response in the small intestine that causes damage to the lining. When damage occurs to the lining of the small intestine, the body cannot properly absorb nutrients from food. This can result in malnutrition, osteoporosis, infertility, neurological disorders, an increased risk for certain cancers.  

How Many People Have Celiac Disease?

In the US, about 1% of the population has celiac disease. That is roughly 1 in 100 people, making it pretty common! There is also a genetic component to celiac disease. If you have a close family member with the disease, there’s a 10% chance that you’ll be diagnosed, too. Even having a family member with another autoimmune disorder can increase your risk of developing celiac disease. 

What Are Common Symptoms?

Celiac Disease Symptoms

We can’t bring up celiac awareness month without discussing some of the most common symptoms to look out for. They include:

  • Failure to thrive or weight loss 
  • Abdominal pain
  • Nausea and vomiting 
  • Constipation 
  • Diarrhea
  • Bloating 
  • Anemia
  • Fatigue 
  • Skin rashes

Because many of these symptoms can be common in many conditions, it can be hard to realize that your little one may have something more serious going on. That was definitely the case for our daughter! Even as a dietitian used to working with kids, it was difficult to recognize that we had a problem until her symptoms became worse. 

How is it Diagnosed?

Diagnosing celiac disease typically starts with blood tests. If blood tests are positive, doctors with confirm the diagnosis with a biopsy of the small intestine. 

Biopsy Image

Where Do I Start as a Parent When my Child is Diagnosed With Celiac Disease? 

Once diagnosed, the only treatment is to eliminate all sources of gluten in the diet. You can start by downloading our free Gluten Free Food List. This will give you a good start with which brands have gluten free options that are kid-approved … at least in our household! 

You can also visit our Resources page to find organizations where you can learn more about celiac disease.

5 Ways to Support a Child With Celiac Disease 

1. At Home:

When a little loved one is diagnosed with celiac disease, it can also be hard on other family members. The family food dynamic gets flipped upside down and everyone is affected by the changes. Depending on the age of any siblings, they may need some help understanding how important these changes are and why it is important to be supportive.

As parents we have tried to keep things as “normal” as possible by finding substitutions for all of our daughter’s favorite foods. Eating out has been a little more challenging, but we have managed to find options at her favorite restaurants. We do our best to pack similar foods for occasions like birthday parties or sporting events. As a family, we also try not to eat gluten-filled treats in front of her. She is still adjusting to her diagnosis, and this can be really upsetting for her. 

2. At School or Afterschool Activities:

If you are sending birthday treats to school, are helping to plan a school event, or have sports snack duty, check in with class teachers or coaches to see if any kiddos have a gluten allergy (or any other allergy!). 

We have awesome teachers who let us know what days birthdays are so we can pack a gluten-free treat. Even though she is not left out, I know my kiddo hates feeling different. Something as simple as sending in gluten-free treats for the entire class/team, or having a gluten free pizza available, can make a HUGE different to a kiddo with celiac disease.

3. Playdates or Sleepovers:

You may have to hold off on playdates or sleepovers until your little one can be trusted not to sneak snacks they shouldn’t eat, trust me, we’ve been there! Try to establish at least one friend’s house early on where you have a good relationship with the parent(s). 

Initially we tried to have playdates just at our house so we could control the food environment, but we quickly realized that could not say no forever. I just make sure to talk to the parents and explain exactly what our kiddo is allowed to eat. I also ask that they reach out if they are unsure about something … and not to believe everything that my little one claims she can eat. She is still learning, and food labels can be tricky for adults, let alone a 7-year old!

4. During Holidays:

It can be easy to feel overwhelmed about how to alter traditional recipes to be gluten-free and just purchase separate foods for someone with celiac disease. However, kids can feel like the holidays are ruined if they miss out on all their usual faves!

I urge you to try your hand at substitutions! Gluten-free options have really come a long way in the past several years and it has become easier to find ingredients to swap out. I have made gluten-free pies from scratch that my family thinks are better than the original recipe! There are also recipes online that are becoming easier to find. Come back and check out our blog often for new recipes. 

(And don’t be afraid to have to gluten-free fails! We’ve had some good laughs and then discuss what we will try differently next time. It’s been a surprisingly fun way to bond with my girls, as well as teach them about nutrition and different cooking techniques.)

5. Every Day:

Be positive! Sometimes it’s all about how we approach things and the mindset we have. If you are constantly talking about the “special” options your gluten-free kiddo can have, they start to feel like they are getting a better deal! 

I am constantly seeking out new gluten-free snacks and foods for our daughter to try so she has something to look forward to on a weekly basis. This has really helped her attitude and I’ve noticed that she is focusing less on what she can’t have. (She also loves to tell her older sister to stay away from her snacks!) Making it a fun adventure to find new restaurants we can eat at and discovering new foods has really helped shift our entire family mindset regarding the changes.  

Want a downloadable version of the 5 ways to support a child with celiac disease to share with friends and family? Get it here!

5 Ways to Support a Child With Celiac Disease pdf

Celiac Awareness Month 2024

What will you do during celiac awareness month? Let us know in the comments!

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