Our Five Ring Circus: 10 Things I've Already Learned About a Gluten-free Diet

Tuesday, October 10, 2017

10 Things I've Already Learned About a Gluten-free Diet

10 Things I've Already Learned About A Gluten-free Diet #glutenfree #celiacdisease #downsyndrome

On Friday night, we received news that completely changed our lifestyle. I think I already knew before we received the phone call, but hearing it still felt like a punch in the stomach. After some testing, we found out that Liam has Celiac Disease. 

10 Things I've Already Learned About a Gluten-free Diet

We have been incredibly blessed, because prior to this,  Liam didn't have any health issues associated with Down syndrome. Up until now, his most serious medical issue was a nose injury from a fall that landed him in the hospital with cellulitis. I know we are incredibly lucky, but hearing that his diet would have to change forever was very overwhelming.

Liam does have a close relative who can't eat gluten, and Celiac Disease is hereditary. Digestive issues seem to be more common in people who have Down syndrome, although this is the first time anything has been wrong. It definitely seems like more people have diet restrictions than not, so it isn't like this is something unusual, but it still doesn't make it any easier to process.

What IS Celiac Disease?

Celiac Disease is an autoimmune disorder that affects approximately 1 out of every 100 people. Eating gluten causes damage to the small intestine. The symptoms vary in each person, but continuing to eat gluten will put that person at risk for long-term, and often serious health problems. The only way to treat it is with a gluten-free diet. It's estimated that 2.5 MILLION Americans are undiagnosed!

What were Liam's symptoms?

In August, we had to stop potty training, even though Liam was almost completely day trained, because he was having severe diarrhea. We thought he had a virus, but that virus never went away. At his 4 year well check, the pediatrician prescribed a probiotic for one month to see if it would get his digestive system back on track. 

When Liam woke up last week, covered head to toe in a blow out, I knew it was something more. That same day, he underwent a lot of testing, and I just had a feeling that gluten would be the problem.

Prior to the start of diarrhea, Liam never had a single symptom. There wasn't any indication that anything was wrong!

What happens next?

Based on Liam's test results, we were told to stop feeding him anything with gluten immediately, and that he would have to eat a gluten-free diet for the rest of his life. This isn't something that will go away, or that he will grow out of.  

Because we just received the results, his appointments with gastroenterology and the dietitian are still a few weeks away. It will take a few months of avoiding gluten before his body begins to heal and his digestive system gets back on track.  In about 3 months, he will have blood drawn again, and they will check to see if his levels have improved.  He will have annual appointments with gastroenterology, and a celiac panel will be added to his already annual lab work. 

I just feel bad, because he won't understand why he can't eat cake at a friend's birthday party or have what everybody else is eating or snacking on at dinners, playdates and parties. We are going to have to take his own snacks everywhere we go, and bring a gluten-free treat to every party. And going out to dinner just got a lot more complicated!

We know a surprising amount of people who are on gluten-free diets, so they have been a great resource for us. We spent the weekend talking to friends, asking questions, researching online, and shopping for new food. And although it's still overwhelming, and WILL be a complete lifestyle change for Liam, I have a better grip on the situation! 

10 Things I've Already Learned About Switching To A Gluten-Free Diet

Eating a Gluten-free diet is expensive!

After a trip to the grocery story, I suffered from serious sticker shock. As everybody knows, it's more expensive to eat healthy whole foods, which are the main components of Liam's diet. But all of the gluten-free alternatives are incredibly expensive, too. 

I went grocery shopping for just Liam on Saturday night. I spent $84 for one week's worth of food for him. That's a whole lot of money for groceries for a tiny, 30 pound, 4 year old!

Liam loves cereal bars and chicken noodle soup, and he can no longer eat those foods. It was $6.99 for a box of 5 tiny gluten-free cereal bars and $3 for a small can of soup.  I know I'm going to have to search to find a cheaper brand of cereal bars that he will like, and learn how to make my own chicken noodle soup for Liam.

Aldi will apparently be my new best friend.

I have a confession. I have NEVER shopped at Aldi before. And apparently, that was my first mistake. According to all the gluten-free gurus on Facebook, Aldi is the best place to shop for gluten-free food. I will be heading there next weekend, in the hopes of finding cheaper gluten-free alternatives!

You have to read EVERY single label. 

Although most major brands do a great job of putting gluten-free clearly on the label, there are just as many who hide it in small print below the ingredients, or don't include it at all. I had to research exactly what to avoid, then read every single label at the grocery store. My grocery shopping over the weekend took a lot longer than usual! I'm sure this will become second nature to me, but for now, google is my shopping sidekick!

Gluten is hidden in foods you wouldn't even think about.

Breads, cereal, crackers and pasta are the obvious culprits, but gluten is used as a filler in so many foods! I was very surprised to see it in some of our favorite brands, and had to make the switch to other brands. I can't wait to receive the brand-specific list that I was promised by the dietitian! 

Gluten can also be found in vitamins, dental products, and medications. 

There are plenty of gluten-free alternatives.

Even though it seems daunting, eating gluten-free isn't terribly difficult. Liam's diet already consisted mostly of whole foods, and he didn't like many processed foods like bread, crackers, cookies and cereal. He did have a few favorite foods that were full of gluten, so we had to look for alternatives. 

As of right now, we are sticking mostly to his whole foods diet and gradually introducing gluten-free alternatives. Gluten-free pasta is a bit more expensive than regular pasta, but Liam didn't even notice the change, and gobbled up his favorite meal. We all tried his pasta and thought it tasted a lot like our regular brand!

There are also plenty of whole grains that are naturally gluten free. We will be adding a lot of quinoa and rice to our meals! Plus corn, beans, and potatoes are all great alternatives!

Baked goods are a bit more difficult. There are gluten-free cake and cookie mixes available, as well as gluten-free flour, but they don't tend to taste as good, and have to be loaded up with sugar to make them resemble regular baked goods. That isn't exactly healthy, so we were told to avoid baked goods unless it's for a special occasion.

We will not be making the switch to a gluten-free family.

Many people I spoke with told me their entire family went gluten-free, and feel much better because of it. I, however, do not feel like it's fair to expect Dylan, Lexie, Lily, Grant (or myself) to unnecessarily change our diets. It would also be way too expensive for a family of 6!

We will be adding more foods that Liam can eat to our meals, such as rice, beans and potatoes, and be eating more of a whole foods diet, specifically when it comes to snacks. If we keep a lot of processed snacks out of our home, Liam will never realize he is missing anything! But for the most part, I will continue to cook our meals as I usually do, but make Liam his own gluten-free side, if the recipe doesn't include naturally gluten-free foods. 

Meal prep is necessary.

Liam loves pasta, soup, and macaroni and cheese. Rather than cooking his own separate lunch each day, I decided to do some meal prep over the weekend. I cooked a box of gluten-free pasta, and put it in individual serving containers, and prepared gluten-free spaghetti sauce, cheese sauce, and chicken broth to freeze until needed. That way, I can whip up a lunch or a side for dinner quickly each day.

I also set up a drawer just for Liam, filled with gluten-free snacks. Anything that came in a large bag was separated into small resealable bags for easy portability. He can choose whatever he wants out of that drawer at snack time, and I can easily grab a few gluten-free snacks on my way out the door. 

We have to worry about cross contamination. 

This is something I didn't even think about! If we are eating any food that contains gluten, Liam's food will have to be prepared separately, using separate cooking utensils. I can't use wooden cutting boards or spoons to prepare his food, and if the time comes when he actually likes bread, he will need his own toaster. I'm certain that list is more expansive, but those are the basics that I have learned so far!

There's an app for that.

There really is! I was told (by several people) about an app called Find Me Gluten Free, and while I was searching for it, I found a lot more! There are also apps for gluten-free recipes, gluten-free food finders, gluten-free diet guides, and gluten-free scanners. 

A gluten-free diet is very healthy.

A gluten-free diet consists mainly of whole foods and naturally gluten-free grains. Because many processed foods and baked goods contain gluten, they have to be avoided. Liam's new diet is mostly fruits, vegetables, dairy, protein, and nuts and seeds.

Liam is very high energy and has always eaten mostly whole, healthy foods, so he doesn't gain weight very easily. He just reached 30 pounds shortly after turning 4 year old, and I am a bit concerned that gaining weight is going to be more difficult. This is a necessary change, so we will make it work. Hopefully the dietitian will have some good ideas for us!

I had something completely different planned for today's post, but sometimes life gets in the way! Instead, I opted to share about our new journey. I'm sure I'm going to learn a lot about Celiac Disease and a gluten-free diet along the way, and eventually be able to help others who are just starting out on this journey, too! All I know is that I love my sweet boy with all of my might, and I will do anything I possibly can to keep him healthy and happy!

10 Things I've Already Learned About a Gluten-free Diet

10 Things I've Already Learned About A Gluten-free Diet #glutenfree #celiacdisease #downsyndrome


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  1. That is rough! Glad you have a lot of support. Back when I was 26 or so, I found out I was allergic to all sorts of foods, super hard to adjust, but eventually you do. He most likely won't remember a time when he could eat it, so that's good. Unfortunate for me, I remember what everything tasted like, boo! I got really good at reading labels, and YES to thing being way more expensive! Yikes, it's so expensive, even for a loaf of bread! Food for life brown rice english muffins are really good, it comes in the cold section. I shop at Sprouts for most of my stuff, they have really come a long way in health food since I was diagnosed...good luck!

    1. Thank you so much for the tips! I was thinking that it's probably good that we found out when he was so young!

  2. So sorry to hear about the new diagnosis. Sounds like you've done a lot of research! One suggestion I have for you is what a parent in my kids' classes does - instead of asking that everyone send in gluten free treats (which we do, when we can!), she asks that parents let her know when they'll be sending things in so that she can send in something similar for her kids to enjoy. I liked that because she is the one who knows what they can eat and as a parent I don't want to leave them out, but it isn't always easy to get gluten free for the whole class!

    1. That's exactly what I plan on doing. His preschool teachers actually provide snacks, so I just send in what he can eat everyday!

  3. What a huge change friend. So happy you didn't miss a beat and dove head first into getting things figured out. Amazing job mama! I have a friend with celiac and it is expensive but thankfully thing have came a long ways over the years. I hope you grow to love Aldi and that it takes some of the expense out of things. I also wonder if some things could be bought at Sams and if that would save too. You'll have to do another update once you learn the ropes a bit more. Praying for you girl, and Liam too!

    1. Thank you so much, Beth! I actually went to Aldi and I loved it. I have been spending an unbelievable amount of money at my grocery store, and found so many great alternatives there!

  4. Sorry to hear that but you sound really on top of it already! One of my friends has Celiac and she makes zoodles or spaghetti squash as "spaghetti." I wonder if that would be cheaper than gluten-free pasta. Also, the website skinnytaste.com has an entire gluten-free section. You just go to the top righthand corner and click "gluten free" and there are pages of recipes that your whole family might enjoy.

    1. Thank you so much! The gluten-free pasta isn't bad. It tastes good and isn't overly expensive. It's all the special gluten free snacks and cookies that are pricey!

  5. Wow, there's always so much to learn as a mom. I tried a gluten free diet, but you're right in that it's very expensive, and it makes it so that you have to read all the labels. Even more, it makes it very difficult to eat out. You're doing a great job, Stefanie! I'm so impressed already with how much you've learned. Here's to hoping that Liam won't be losing any weight but will be super healthy!

    1. We haven't gone out to eat yet. I'm not going to lie...I'm really worried about that one!


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