When your child has the symptoms of Celiac Disease but doesn't have Celiac Disease, could it be Non-Celiac Gluten Sensitivity?
In this episode I am talking about my personal experience with trying to get the answers to my son's health issues and then discovering he has NCGS. I also interview him on the show to learn about his experience. My cutest guest so far.
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So on today's show, I wanted to talk about non celiac, gluten sensitivity, because I see more and more people getting frustrated when they get their children tested for celiac disease. When they have celiac disease themselves and their child is showing the same symptoms as having celiac disease. But when they get tested, they have shown that they don't have celiac disease. So the parent is frustrated and I personally can vouch for this from experience because my son from a quite a young age was starting to show symptoms of celiac disease. And when I questioned it with my personal doctor, she recommended that testing wasn't done until he was three years of age. And I didn't really like that. I , I didn't agree with it, but it was just one of those things where they, they just wouldn't test no matter how much I pushed for it and requested it. He was three before we actually even were able to get a blood test done to get anything sorted. And unfortunately this was around the same time that COVID hit. So getting appointments at the hospital were, it was, it was hard. It was really tough. And as it turned out, we were able to roll out celiac disease. So he , um, he actually has the gene for celiac disease, but he doesn't have celiac disease at this point in time and saying that he could actually have that gene triggered later on in life and he could have celiac disease, but at the moment, he has been diagnosed with non celiac gluten sensitivity. So this is only because we pushed for it because when , uh, so when they did all the testing for celiac disease, we had to put him on a very high gluten diet for six weeks before they would do the blood test. So when our doctor first did it , um, I told her that he hadn't eaten much gluten up until that point. She didn't care. She was just happy to do the blood test, which I knew was never gonna be a great outcome. She then referred us to a hospital. Um, we went to the pediatrics section of the hospital and we had appointment after appointment with people that it wasn't their expertise. They didn't know much about it. I was actually educating them more on celiac disease than what they knew. So I just kept pushing and pushing and pushing because I could see that my son was not right. He didn't have the energy that most children have at the age of three. Um, he was constantly feeling upset in the tummy. He had diarrhea. He had all of the symptoms that I knew related to celiac disease. So I wanted to push for it. So when it finally turned out that he didn't have celiac disease, so they proved that he didn't have celiac disease all to do with his blood tests. Um, I was still convinced that there was something not quite right there because when he did the six weeks testing, we did that. We actually had to do that multiple times when he went on gluten for the six weeks, each time I could see that his symptoms got worse and worse. Now we are a predominantly gluten free family. We don't have much gluten in our household. So he already wasn't having much gluten. But when he went fully on gluten, he was terrible. His, his bowel movements were disgusting. He was so lethargic. He was constantly on the couch winging that he was, I shouldn't say winging. He was complaining how tired he felt. He looked so dark under his eyes. There were just so many things that it was just horrible. So I followed up with , um, a gastroenterologist. I wanted to get another opinion from an expert. And we were told by the hospital, it could take months or even years to get an appointment with a gastroenterologist. So we went private and we went and had a private appointment with a gastroenterologist. And he confirmed that reef has gotten on celiac, gluten sensitivity, and that it's important for him to eat a gluten-free diet. Um, one of the things that I picked up on <laugh> was he commented on, it's not as serious as celiac disease and you know, it's not an autoimmune disease. However, he did say that if reef gets older and wants to eat gluten, it's not gonna be a big deal. He has to just deal with the ramifications of how he's going to feel that didn't sit right with me. And I'll talk about that a little bit more in a moment. And then the same day that we had our private appointment, a letter arrived in the post, I can still remember the letter arrived that we had a confirmed appointment with the public health system, which obviously was gonna save us a lot of money, but we still went along to our private appointment. And I decided we would still also go to our public appointment as it was free of charge. And I was able to get another opinion from a different gastroenterologist. So the next gastroenterologist basically said the exact same thing that the private one did and said the same things along the lines of he needs to eat gluten free . But if you know, he has a little bit of gluten here and there. It's not serious as celiac disease. So me being me that has to know everything I came home and I researched the absolute heck out of it as much as possible. And it turns out that many people with non celiac , gluten sensitivity decide that it's okay to have a little bit of gluten. They're not as serious about it. They're not as strict about it as people with celiac disease. But the thing is, it causes so much inflammation in your body that people with non celiac, gluten sensitivity have more chance of creating more disease in their body as the years go on because they have that inflammation in the body. So I made a decision right there and then that we would be strict with reef's diet. And we would make sure that he was eating as if he was a celiac. Now we eat a hundred percent gluten free him and I, we are super careful with everything with cross contact, with eating out everything. We, we act as if we are both celiac. I tell people that he has non celiac gluten sensitivity, and that he has to eat gluten free . But to me, it's like he's got celiac disease. We treat it very, very seriously. The only time that I let it slide is when he's been to a birthday party, I still ensure that he has gluten free food. But if there's an instance recently where he was given , um, pizza at a party and it was gluten free pizza, but it wasn't pizza that I personally would eat because I know that there are risks there. So there are , there are times when we ha we do allow that tiny, tiny risk, but that is very, very, very few and far between that is not a regular thing. And that is the, probably the one tiny little thing that makes it a little bit easier. But having said that, you know, is it's very rare. It doesn't happen all the time. So, you know, it might be once in a blue moon that that situation arises. So non celiac, gluten sensitivity, if your child has all the symptoms of celiac disease and you, haven't got a diagnosis push for finding out if they've got non celiac, gluten sensitivity, because you can help your child to feel better. And I have seen my son just, oh , he's turned into a different kid since he got his diagnosis. So he was diagnosed around the age of four. He was at kindergarten when he got his diagnosis. So he had been at kindie for a couple of months before he got his diagnosis. And then from there on, we were able to tell the kindergarten that he has to eat gluten free . We were able to educate him. Luckily for us, he was already very aware of what gluten is and knowing that I have to be very careful. We talk about gluten free , constantly in our family. He knows all about it because these Nan celiac his uncle celiac. So he knows as well that it it's pretty normal to him. So I think this helps a lot when you've got a child that lives with you and the parent is already celiac because they've got that exposure. It's not, not brand new to them. So it's about educating them. It's about inspiring them and letting them know how much better that they can feel when they eat gluten free . And we teach him to stand up for himself. He is a major, major advocate for himself. He's now five and a half , and he blows my mind with the way he sticks up for himself, the way he questions things, the way he talks about food. He's just, he is incredible. He's just, he just, like I said, he blows my mind how switched on he is . And I'm so proud of how he deals with it. Sometimes he gets upset that he misses out on things, but in general, we, we make life as normal and, you know, as comfortable for him as possible. And he remembers how crappy he felt beforehand. So he knows it's important to eat gluten free . And that's the best thing that a child can remember how crappy they felt before and how good they feel now. So he has grown so much since he's gone off gluten. I cannot believe how quickly he grew in height. When he went off gluten and all of the horrible symptoms went away. He's so much more energetic. He's so much happier. He's so much more lively. And he eats really, really well. He will choose healthy food over packaged food. Most times I, he wasn't feeling well this weekend. I think he's come down with a bit of a cold. And I offered him just some potato chips, just, you know, something savory that I thought might make him feel, you know, just that little comfort food. Sometimes that's nice to have those treats. And he said, no, thanks mom , can you please get me two carrots and some Cucu <laugh> . So he he's very switched on. He knows how to look after his body already. And that's the thing. You can teach your children to be amazing and incredible with the way that they choose food and advocates for themselves. So if you need to push for this, and it's something that, you know, a doctor said, no, they don't have celiac disease. And you think it's okay to keep putting them on gluten, you know, for yourself as a mom or a dad, or even a grandparent, you know what that child is reacting to. You can, you can see it in the way that they behave and the feelings that they get after the way that they eat. So stick up for your children, do the best that you can for them and, and get a result. Because you know, as , as you know, living with celiac disease, life is wonderful. When you eat gluten free . Now I thought it'd be pretty cute to get reef on the show . So I'm gonna bring him in, in a moment and we're gonna have a little chat with him and hear how he is going with living with non celiac , gluten sensitivity. So we'll be back in two sec . All right . Welcome to the healthy celiac podcast. You wanna tell everyone your name today, buddy reef ? That's right. Reef reef,Speaker 2:
R ESpeaker 1:
E F R E E F reef. That's right. And how old are you? MadlanSpeaker 2:
Five. Exactly. So you were told about a year ago that you couldn't eat gluten anymore. Is that right?Speaker 2:
Yes, mom .Speaker 1:
Yes. And do you remember before, when you used to be allowed to eat gluten, how it used to make you feelSpeaker 2:
Bad ?Speaker 1:
And I , Hm , no .Speaker 1:
How did it used to make you feel so when you ,Speaker 2:
I had vomit. Yep . I ,Speaker 1:
What else did it do? So gluten used to make you vomit. What elseSpeaker 2:
Have diarrhea and make me sick .Speaker 1:
Yeah ,Speaker 2:
Sure . Treatments .Speaker 1:
Yep . What else did it do? I think it used to make you very tired and lethargic and have a sore tummy too. Yeah , mum . Yeah. All right . So what do you do when someone offers you food and you don't know whether it's safe?Speaker 2:
I don't eat or ask their fits noodle food .Speaker 1:
Good boy. You do. Don't you. You're very good at checking your food . Gluten free . And what's your favorite? Gluten free food reef.Speaker 2:
Sushi. Yum, yum. And what do you wish you could still eat? What's the one thing that you miss?Speaker 2:
Oh , yoSpeaker 1:
Oreos . Do you think we have some pretty good biscuits though, for cookies? Yeah . Yeah, we do. Don't we, we have some good options. And why is it important that you eat gluten free food?Speaker 2:
Because otherwise I will have diarrhea. Yeah . Um , from it or make me sick mm-hmm <affirmative> or get target .Speaker 1:
Yeah. That's right. Well, thank you so much for being on the podcast today . You're definitely my cutest guest I've ever had.Speaker 2:
I love ,Speaker 1:
Oh, I love you too . My sweet boy. You wanna say bye to everyone,Speaker 2:
Baby ? <laugh> .