Our Experience Going Gluten & Dairy-Free

When sweet moms offer to share their kid’s snacks with mine and I have to politely decline because he’s allergic to gluten and dairy, their eyes get big and the next question is typically, “How did you figure that out?” So let me take you on our experience of going gluten and dairy-free.

We brought Kai home when he was 5 months old, and he was 22 months when the tests came back. It took us awhile to figure this out, as gut issues were a problem from day one, and it wasn’t just because of food. Chronic stress, fatigue, trauma, and environment all play a role in gut health. It’s why I see many foster and adoptive families completely change their diet, because emotions definitely affect and alter what is happening on the inside. Your gut is your second brain, but more on that later.

So when he first came home, there was a mix of so many things. He was scared, in a completely different country and environment, and he didn’t know who we were. We were trying to figure out the best American formula that worked for him, and that took several months. In the beginning, we just had to go with the first pediatrician we could find, and I will say this right here, right now, moms: Find a pediatrician who will listen to you. This one did not. She would roll her eyes at every concern and since our adoption wasn’t final yet and we still had a social worker coming to our house every month for 6 months, I didn’t have a choice. I had to do what she said, even though I KNEW it wasn’t best for my child. And I know that the formula we landed on absolutely contributed to his continued gut health issues (this was confirmed by our next and current pediatrician).

When he turned a year old, the first pediatrician wanted us to try whole milk obviously, and I knew based on what we had already seen with the formula that this was not going to go well. And it didn’t. I lost count of how many baths I gave that day because of explosive things coming out of his diaper, so I immediately said no more. We switched to raw goat’s milk I got from a farm through a co-op, and he tolerated that much better. Not perfect, but way better. It was a long 6 months, and finally when everything was set, at 15 months I ran as fast as I could to our new pediatrician. And I am so grateful for him and his staff.

He’s an MD who is holistic in his approach. And we share the same view about medicine: let’s exhaust all natural possibilities first before jumping to conventional methods. He understood trauma and knew it was all connected, which is why we did a big complex visit. I remember sitting in his office teary-eyed because I just wanted my son to feel better, and the first thing he said after lots of questions and digging was, “We need to check his gut health.” And so it began.

The next several months there were lots of stool tests while my kid was still in diapers. Super fun. We found out in that April he had contracted a really rare bacterial infection. Who knows where he picked it up, but he had it for awhile and the last pediatrician never caught it. In all his years practicing medicine, Kai was only the second kid he’d seen with it (we’re such trendsetters in this family). So, a regimen of both high-quality supplements and a low-dosage of a med for a whole month. After that, another stool test to make sure it was gone and, thankfully, it was…but we were still having problems.

So at the next appointment, he decided to look at nutrition and believed we should test for gluten and casein (milk protein found in dairy, different from lactose). The dairy thing, I could see, but I kept thinking please don’t let it be gluten.

Here were the signs we were seeing:

Aggression: Not toddler slaps and meltdowns, but major, Hulk-like, scared me a bit aggression.

Head-banging: We believe that this was definitely tied to sensory processing, but because people who are sensitive to gluten experience migraines after consumption, there’s a high possibility he was getting headaches and couldn’t tell us. Head-banging was a way he was trying to communicate and find relief.

Constipation: We could not get this kid to poop on a regular basis, no matter what we did. His diet was healthy, but at times it would be days, and then when he did poop, it would hurt him, so it was a vicious cycle.

Eczema and skin sensitivity: This we saw very early on. I could keep it at bay with natural remedies and kicking chemicals out of our household all made a huge difference, but it never fully went away. Eczema is a sign that there is inflammation going on somewhere in the body, and until you get rid of that, no dice.

Belly Pain: Again, he couldn’t tell us, but I’ll never forget two excruciating nights. One after his first birthday party when we let him eat the whole smash cake, and another time after we took him to Chuy’s and let him eat the beans and queso. That poor baby did not sleep and was pulling at his belly, kicking, screaming and writhing on the bed. It was so sad, and mama-guilt was high those nights.

I kind of knew in my heart that this must be the problem. So we did a urinary peptide test and another stool test. I got the results in my email and I had no idea what the numbers meant, but they were high and looked high on the graph. When I came into the office, my suspicions were right. Gluten and casein sensitivity levels were crazy high. He might be able to tolerate some raw dairy when he gets older, but gluten doesn’t stand a chance. So, no more gluten, no more dairy. We needed to end this inflammation and pain.

Mamas or just people in general who may be dealing with this: let me encourage you for a moment. If you just found out, or you are doing an elimination diet for yourself or your child, it’s overwhelming in the beginning. Right now, all you can probably see is what you or your child cannot have. Much like sugar, you realize that gluten is in freaking everything. And if it’s not in there, it was processed on shared equipment with things containing gluten so it’s a no-go. Things that say they are “dairy-free” many times aren’t. They are lactose free, but not casein free, and casein is the kicker. You get excited when you see something is gluten-free, but then you flip it over to read the label to check other ingredients and it says CONTAINS MILK and you literally throw it back on the shelf. Or it says VEGAN and you are going YAY inside until you flip it over and read that, yep, it CONTAINS WHEAT. And at that point you just need a bottle, not a glass, but a full bottle of wine.

You now have to spend at least $30 for every 3-year-old friend’s birthday party because you not only have to bring a gift, you have to go spend $10 on one cookie and one cupcake from a speciality bakery to make sure your kid has a treat too, and make sure you have snacks that hopefully look like what is being served so your kid doesn’t throw a fit.

Holidays are stressful because, again, you’ve got to prepare your own family’s meal or stand over the kitchen like a hawk to make sure whoever is cooking doesn’t put that spoon that touched the butter into something your kid can actually eat, therefore cross-contaminating it and then all is lost.

You just have to be constantly prepared.

But, friend, I promise you that it does get better. You WILL conquer cooking again. There are aisles in the grocery store you just know not to even walk down. You will learn that this is your life, your health, and it WILL become normal for you. You learn to navigate and explain and teach your kid to ask others, “Does that have gluten or dairy?” Or “I’m allergic to gluten and dairy, I can’t have that.” You look at all the things you CAN have. And you realize it’s just what you are supposed to be eating: REAL FOOD. And you feel better. And you have a new kid in your home. And bonus, moms, you *might* shed a few pounds with those tears you cried, so high five. If I can encourage you with just one more thing it’s this:

Do this as a family. If one of you needs to eat this way, all of you need to eat this way. People ask me when we grow our family again, am I going to make the kids eat this way even if they aren’t allergic? Absolutely yes. You might say that’s not fair, but is it really fair for one person to constantly be told they can’t have something and watch everyone else eat the same thing? If my entire family was eating chocolate ice cream and they gave me a bowl of strawberries, and I had to sit there and watch them all eat ice cream while I ate strawberries, things might get thrown. Tables might get turned over. Bowls might be going through a window. Have your treats, sure, but what a sweet opportunity to get to support each other and do this as a family rather than just one person by themselves. Things are always easier when there is support. And you will all be healthier because of it, I promise. It’s worth it. Because it is truly amazing that God gave us what our bodies need in good food and nutrition, and the healing from the inside out that can be done by just eating right and being good stewards of our bodies.

Mamas who have children with special needs, I highly encourage you to look at diet changes. Some of the behaviors we were seeing definitely lessened or just went away completely when we made this change, and, in some ways, I felt like I had a new kid. Do your research: there’s lots of success stories and studies out there. You have options to try first. I’m not saying you shouldn’t put them on medication, but I am saying to think it through and try some things first. If possible, let that be a last resort. You would be surprised what good food and high-quality supplements can do.

So, be your own or your child’s advocate. Find someone who will listen to you and take you seriously. Then make the switch and do it together. It’s not easy, and renewing your gut health takes time, but it is worth the freedom and the changes in the end.

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