Last month, we discovered that my second child, who’s 4, has celiac.
The diagnosis didn’t come as a complete surprise as my husband has celiac, as do several members of his family (and one member of mine). While my husband Matt is asymptomatic, my son (Mathias) was not, which was what prompted me to get him tested in the first place without waiting until he was older (as many pediatricians had often advised me).
Below I outline how we went about figuring out he probably had celiac, as well as the steps we took after we confirmed that he did.
Note: There are affiliate links to some of the products and books mentioned below.
The Diagnostic Process
Some of the things that clued me in that we needed to get him tested ASAP were:
- His (very) small size and stature for his age
- His obsession with food and the next time we were going to eat, coupled with his constantly telling me that he was “starving” (even after he’d just eaten large portions of food)
- Extreme crankiness and irritability, especially when hungry
- Extremely frequent bowel movements (almost every time he went to the bathroom)
- Complaints of his stomach hurting
Now, some of these things can often just be typical toddler behavior. I mean, MOST 4-year-olds have frequent bouts of crankiness and irritability, and young children often get very dramatic especially when coming up on a mealtime.
However, the thing that clued me in that his was beyond normal was that it became almost an obsessive thing: we would have literally just eaten 10 or 15 minutes previously (and my son had eaten large portions and multiple helpings), and he would be crying right after that he was so hungry and that his stomach hurt.
I had talked to two different doctors about it, and both had initially advised that we hold off until he was a little older, probably (I assume?) just because it’s difficult to get a preschooler to sit still and handle getting their blood drawn. However, I just knew we couldn’t put it off anymore, so I ordered the blood work to be done.
I won’t lie, the actual blood test experience ended up being truly awful. Perhaps because the nurses weren’t trained to work with children (I’m guessing), they lacked much bedside manner in explaining to him what was going on, and the first vein blew after they had to dig the needle in and move it around quite a lot to find any kind of flow. The second stick they tried (by a second nurse) produced absolutely nothing, despite (again) them pretty aggressively moving the needle around. Finally, a third nurse was able to successfully draw blood with the third attempt, in his hand. (Of course, he was screaming and sobbing this whole time, which made the experience traumatic for ALL of us. I will say that I was super proud of him for holding absolutely still the entire time though, despite how awful the ordeal was.)
If you have to get your child tested for celiac, I highly recommend doing so in a pediatric setting if at all possible. We don’t have any pediatricians close to us at all (the nearest is located over an hour away), so we just had to go to the nearest hospital lab to get the work done.
About a week later, a nurse called us with the results:
Mathias officially had celiac.
Breaking the News
We actually got the call from the nurse while we were on our long-awaited Hawaii vacation, which complicated things a bit. After talking back and forth about what to do and whether or not to start ASAP with taking him off gluten, we instead decided to go gluten-free as much as would be fairly easy on the trip, but we weren’t going to be strictly taking him off of it until we were home and could plan things better.
We let him have McDonald’s chicken nuggets (his very favorite) one last time while on the trip, and we let him have a few other little things, but where we could make easy swap-outs, we did so immediately.
We actually first told his older sister (who’s 7) a few days before we told him, just because we knew that HER reaction would definitely help or hinder things, and we didn’t want her making a huge deal out of it. We explained to her everything he could and couldn’t eat and how certain things might be hard for him (like if everyone else got a treat at school or church that he couldn’t have) just so that she could be an advocate for him and so that she could be aware of his feelings. I’m so glad we told her first because she ended up being a real big help later on when we sat Mathias down to let him know.
We chose a quiet time right after a (gluten-free) dinner to sit down Mathias and tell him about the diagnosis. It really helped that Matt has already dealt with the condition for years, so the kids are very familiar with basically what it means and that “Daddy can’t eat certain foods because they make him sick.”
We were nervous about how he’d take it, but he actually surprised us by handling the news like a total champ. In fact, he pretty much took it almost as a badge of honor because he was “just like Daddy!”
A few things that we did though that really helped:
- We emphasized that wheat and gluten were making his body sick and that he would feel SO much better when we changed what he was eating.
- Since Mathias knew all too well how crummy he’d been feeling for the past several months, it didn’t take much to get him on board with anything that was going to help him feel better. We explained that the reason his stomach had been hurting so much and the reason why he was hungry all the time was because he has celiac and had been eating things his body couldn’t handle. We let him know that once we changed his diet, his stomach should stop hurting, and he would feel a lot better and a lot less hungry overall.
- We emphasized all the foods that he still COULD eat, and reminded him that our family was actually eating a lot of gluten-free meals anyway just because his dad already needed to.
- While it was important to be absolutely clear about what he could no longer eat (more on that in a minute), it was just as important to remind him of all the great things he already loved that he could still enjoy. Because we’ve been on the gluten-free train for years now in our family, we knew that even things like pasta and Oreos and breakfast cereal all have great gluten-free options. We re-emphasized that we could still make him versions of his favorite things (like macaroni and cheese) and that he could still eat all the fruits, vegetables, dairy, and even many of the sweets that he already liked.
- We were very clear about telling him upfront what he was no longer going to be able to have.
- Obviously, we needed to not beat around the bush about all the things that he couldn’t have anymore, especially the things he ate most frequently. For him, the hardest things to give up were McDonald’s chicken nuggets, store-bought bread, certain breakfast cereals, and flour tortillas. I couldn’t do much about the nuggets (we’ve just since stopped going to McDonald’s altogether), but I have been making a really good homemade gluten-free bread for him (from the cookbook I name below), and we’re trying to sell him on corn tortillas. It’s a process 🙂
- We let his teachers and the important adults in his life know ASAP.
- We don’t expect everyone to cater to him, but most people once they know are very accommodating. For example, his church leaders often bring treats for the kids, and now they’ve been much more aware of always bringing gluten-free options for Mathias to have. Once preschool starts up again, I’ll be dropping off gluten-free treats to his teacher for those occasions when a classmate or someone brings in a treat (such as cupcakes) that he won’t be able to eat.
Making the Change
I was super grateful we’d already been dealing with eating gluten-free for one family member (and sometimes two, when I’ve gone off it in the past) for quite awhile because that helped make the change nearly seamless.
The biggest difference is that now, almost all of us are eating gluten-free all the time, just because 1) the process of meal planning is easier that way, and 2) no one feels left out. Before, there were times when I’d occasionally make a treat that Matt couldn’t have (or we’d go out to eat at a restaurant that didn’t have many options for him), just because I knew he was an adult and could handle himself.
With a young child, it’s a different situation.
I no longer feel okay about saying we’re all going to McDonald’s or the Sam’s Club cafe, for example, when I know there won’t really be many options for Matt and Mathias. Before when we’d do that, Matt would just get a drink and an ice cream or something and then eat later, but we can’t do that with Mathias. Now we’re definitely making the whole thing much more of a family affair, which means that all of our dinners are gluten-free and nearly all of the snacks and breakfast cereal options that the kids can get for themselves are also gluten-free. We research out restaurant options before we go anywhere, and when I do bake up a special treat nowadays, it’s pretty much always gluten-free.
On the occasions when I do have something with wheat in it at the table, I make sure there’s as much of a gluten-free equivalent as I can, and one that tastes pretty good (if I can help it). Since store-bought GF bread is ridiculously expensive and doesn’t even taste very good, I make it a point of making sure I’ve made homemade gluten-free sandwich bread if we’re going to be utilizing bread (or something bread-like, such as rolls or breadsticks) for any portion of the meal. Very occasionally, I’ll make Mathias something separate for lunch (such as gluten-free homemade mac and cheese) if the other two kids want something he can’t have. I’ll usually only do that if the noodles actually sound better to him than the option they’re wanting, just to try and make it as fair as possible.
Favorite Resources
With the increase in people who are needing or choosing to go off gluten, the options are forever increasing and getting better all the time. Sometimes — like in the case of Oreos — the difference between the regular and the gluten-free version is virtually undetectable. In others, such as with pasta, you can definitely taste a difference, but the texture and flavor is still decent enough that you don’t feel totally deprived.
Also, a huge key in making this more enjoyable for all of us was investing in a couple really excellent cookbooks and taking the time to perfect some key recipes from those (such as the recipes for sandwich bread, chocolate cake/cupcakes, chocolate chip cookies, banana bread, pancakes, and more).
Our absolute can’t-live-without cookbooks are the America’s Test Kitchen cookbooks, both Volume One and Volume Two. Recently, ATK actually combined them into one huge cookbook, which can be found HERE (and which is the one pictured above). Hands down, if you have any reason to need to start baking and cooking without gluten, this resource is a must-own. Every recipe we’ve tried has been excellent, and in most cases, even people who aren’t accustomed to eating gluten-free can’t taste the difference.
We do own some other gluten-free cookbooks (such as this one and this one), but the majority of the cookbooks I own are just “regular” cookbooks that I’ve learned to make substitutions for.
Favorite Flours
My absolute favorite 1:1 flour (meaning you can substitute in the exact same amount as you would use of all-purpose flour) is Namaste flour, which you can find at Costco. Lots of GF flours have strange after-tastes or under-tastes to them, but the Namaste flour works extremely well in baking and for a thickener in recipes calling for smaller amounts of all-purpose flour.
A good almond flour is sold at Sam’s Club (brand is Blue Diamond), and we’ve had good success with the oat flour (and the oats) from GF Harvest.
Gluten-free baking is much more expensive than regular baking, but I have found that these three sources for these three flours are about the lowest price per ounce that you’ll find most anywhere. (If you know otherwise, please drop a comment below and tell me!)
Favorite Crackers
Now, there are a lot of kinds of gluten-free crackers on the shelves, but I’ve got two that are particular favorites. They can be a bit tricky to find, but if you do manage to come across them, snag them up and give them a try!
The first is RW Garcia sweet potato crackers. You can sometimes find them available at select Costco stores, but I’ve had the most luck just getting them off of Amazon. Like everything nowadays, the current price is much more than it used to be in the past, but I’m keeping my fingers crossed that eventually things will calm down a bit and the price will go down closer to what it used to be, which was around $13 for two bags.
The second kind of crackers we really like are Milton’s Crispy Sea Salt Crackers, which you can find at Sam’s Club.
Favorite Baking Mixes
I’ll often just bake everything from scratch since it seems to taste (way) better that way, but occasionally I’ll reach for convenience mixes, especially since I’ve found a few really good ones.
For cake mixes, Pillsbury has an excellent gluten-free cake mix that almost no one can tell is gluten-free when I serve it at parties. Walmart.com often has some of the lowest prices on the GF mixes but they’re super hit and miss about what they have in stock, so I buy almost all of my gluten-free convenience mixes (as well as GF pasta, of which I prefer the Barilla brand) from Target.com.
One mix we use all the time is Namaste’s pancake and waffle mix, which you can find at Costco. You used to be able to just buy the mix all by itself, but lately they’ve just been serving it in a variety pack with their brownie mix (which is quite good) and their scone and muffin mix (which is just meh). Fun fact: You don’t actually need a Costco membership to buy products from them online — you just have to pay 5% extra if you’re shopping as a non-member, which is what we do since we don’t live near a Costco.
There is Life After Gluten
I know getting a celiac diagnosis and having to totally overhaul a diet isn’t generally the news that anyone wants to hear, but let me provide some reassurance —
Things have been SO MUCH BETTER for Mathias since we’ve taken him off of gluten.
Almost immediately, his frequent need to have bowel movements went to a much more normal rate, and he stopped complaining about his stomach hurting within the first 48 hours. Now that he’s been off of it completely for a month or so, I’ve noticed that his moods are SO much more stable, he already seems to be gaining weight and height, and he no longer frequently asks about mealtimes or whines that he’s hungry. He actually frequently tells us the opposite now — that his belly is so full!! — and it honestly makes me wonder if he literally hasn’t felt sated in well over a year now, which is when I started noticing symptoms.
Additionally, because there are so many people now who have to eat this way, nearly all restaurants (at least in major cities) have gluten-free options or know how to make accommodations, and more and more gluten-free options hit grocery store shelves all the time. So know that there IS hope!!
If you or a family member has recently been diagnosed with celiac or has had to go off gluten, I’d love to hear your experience! Also, please don’t hesitate to drop me a comment below or shoot me an email and let me know if you have any specific questions that I can help you with.