The Healthy Celiac Podcast
Welcome to The Healthy Celiac Podcast—the go-to podcast for women with celiac disease! This podcast is designed to help you thrive beyond your diagnosis and embrace life to the fullest because you are so much more than just a woman with celiac disease.
Hosted by Certified Health Coach Belinda Whelan, who specializes in follow-up care for women with celiac disease, each episode is a blend of practical advice, personal stories, and expert interviews. Belinda shares valuable insights on everything from navigating a gluten free lifestyle to managing the emotional aspects of celiac disease.
Join me as we explore topics that empower you to take control of your health, and discover joy in every meal and moment. Tune in for practical advice and support as we navigate the challenges of celiac disease and empower you to live confidently.
To find out how Belinda can support you, visit her website www.belindawhelan.com and while you're there be sure to download your FREE eBook '11 Mistakes People Make Living Gluten Free'.
For collaborations, please email me info@belindawhelan.com (no MLM opportunities please. 😊)
The Healthy Celiac Podcast
Negative Celiac Disease Test? Exploring Non-Celiac Gluten Sensitivity Ep. 183
What happens when your symptoms scream celiac disease, but your test results come back negative? In today's episode I'm chatting about non-celiac gluten sensitivity (NCGS) through the lens of personal stories, including my own celiac diagnosis and my son's journey with NCGS.
Explore the complexities of living with non-celiac gluten sensitivity, especially in children who endure symptoms just as severe as celiac disease itself. I share about our experiences with both public and private gastroenterologists, and how they ultimately led to my son’s diagnosis. We'll tackle the misconception that gluten can occasionally be consumed with NCGS and argue for a more serious and diligent approach to its management.
Previous Episode Mentioned:
Ep. 106 How to Get a Celiac Disease Diagnosis
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Music Credit bensound.com
If you've been tested for celiac disease because you're convinced that you have celiac disease, but your test has come back as negative, then you might be wondering what the heck is going on, because you have all these symptoms that relate to celiac disease, or you might have tested your child because you have celiac disease. So we're going to answer some questions around this today and help you get some answers. Now, as many of you know, my son has got what's called non-celiac gluten sensitivity and I have celiac disease and I get questions about this all the time. People send me messages constantly asking questions further about this. So I thought it'd be a really good chance to answer some questions and talk about this a little bit more in depth, because it is confusing when you have celiac disease and your child has all the same symptoms as you or similar to you know different ones that you've heard other people with celiac disease have, but then when they get tested, they don't get a result. They don't get a result. So let's talk about that and talk about what could be going on for maybe you or your child or someone else in your life. Now.
Speaker 1:When my son was very little, he started with so many different symptoms that I was a hundred percent convinced that he was going to get a disease diagnosis. It all pointed in that direction. And when we went and got him tested and we were told no, he doesn't have celiac disease, I was actually blown away. I didn't believe it and I was very confused because it just didn't make sense. And to find out that your kid has no answers you know, there's no answers from the doctors as to why they are so unwell, it can be heartbreaking. I know some people are so overwhelmed to think that their child might have celiac disease. But I was actually hoping that it was going to be as simple as that and then that way I knew how to help him get better. So because we were able to rule out celiac disease, we had to delve a little bit deeper and get some further answers. So it did turn out that he got a diagnosis for non-celiac gluten sensitivity and I want to talk to you today about how you can find that out. So people message me and say do you have to do a test to find out if you've got non-celiac gluten, gluten sensitivity? Well, no, it's not a test as such.
Speaker 1:So let's talk about rolling out celiac disease first before we can come to that conclusion. So you go to your doctor, you do all the testing for celiac disease. So initially you need to do the blood test. So so you need to be eating gluten and I've done a full episode on how to get a correct diagnosis, so I will link that below that you can go check out. So you need to go through the process of getting tested for celiac disease. If you've done that process correctly and your doctor is able to say, no, you do not have celiac disease. But you know that you are reacting to gluten, you know that it is definitely gluten, then you can talk to your doctor about non-celiac gluten sensitivity and then that could be the conclusion that they come to. So if you can rule out other things, such as IBS and IBD, things like that, and you know for certain that when you cut out gluten you feel great, but you add that gluten back into your diet and all the symptoms come back, then it's very highly likely non-celiac gluten sensitivity. So it's not a blood test, it's not anything you know, it's not a scope or anything like that. It's basically rolling out everything else and then realizing that the gluten is making you feel rubbish, it is giving you diarrhea or constipation, it is causing bloating, it is causing fatigue, it's causing, um, you know, brain fog, all the different symptoms that are pretty, you know, aligned with celiac disease, but you're not having that celiac diagnosis, okay.
Speaker 1:So for my son, we took him to two separate gastroenterologists and it was kind of a fluke thing. We had been put on a wait list. With our medical system here in australia we have a public health system, but you get put on a wait list and sometimes it can take a year, sometimes it can take years to get seen. So I didn't want to wait long, a long time to get answers for him. So we went to a private gastroenterologist and paid out of pocket to get some answers, and the same day that we were going to his appointment we got a letter in the post from the public system to say that our appointment was upcoming with the hospital. So we went to both of those appointments and both gastroenterologists came to the same conclusion for him that he has non-celiac gluten sensitivity. Now my son does have the gene for celiac disease. Okay, so you can have the gene for celiac disease, or you cannot have the gene for celiac disease but still have non-celiac gluten sensitivity. Okay. So for him. We were told he could become celiac later on in life. Right, he could become celiac. We will probably never know that.
Speaker 1:And the reason for that is he eats gluten-free all the time. He feels rubbish when he accidentally has a little bit of gluten. He is that sensitive. It's not like he would go I don't care, I'm going to eat a donut today, I don't care, I want to eat normal bread. He hates feeling the way that he feels when he has a tiny bit of gluten. It reacts so badly with him he feels horrendous gluten. It reacts so badly with him he feels horrendous.
Speaker 1:He recently accidentally had something that my I'm gonna blame my husband here. It doesn't happen very often, sorry, but my husband did give him something that he deemed would be okay because it didn't have any gluten containing grains in this product. But I know due to you know, being being around this a little bit more and knowing a bit more about celiac disease and products and things like that that it's a very high risk product. I'm not going to name it here because it's not known worldwide, but the product itself is very well known for its cross-contamination and he got sick from that so he wasn't even eating a product that was flat out gluten. It was a product that was cross-contact. He ended up having three days off of school last week because of that, because he was so unwell, he had fatigue, he had diarrhea, he had sore eyes, he had headaches, he had stomach pains. He was not himself.
Speaker 1:So for him, his reactions are very, very similar to celiac disease and because he is so strict with the way that he eats, he doesn't want to feel like that. He doesn't want to risk feeling like that, because he knows within himself how good he feels now eating gluten-free. So I truly believe that he'll never get a celiac disease diagnosis because unless he goes through you know, eating gluten for six weeks and then having a blood test again, what's the point For him? There is absolutely no point of putting himself through that. He knows gluten doesn't agree with him. He knows there's no point in eating it. So for him, he'll never probably get a celiac diagnosis. And this is the same for a lot of people. If you've been given a non-celiac gluten sensitivity diagnosis, why would you then go and torture yourself later on in life and eat gluten, just to find out you've got celiac disease? Maybe, maybe not. Okay, it's probably not worth it.
Speaker 1:So the thing for people with non-celiac gluten sensitivity is when they do eat gluten, it causes inflammation within the body. So all of those reactions that my son has are inflammation. They are the body reacting to the gluten, not happy, don't want it here, and his body is screaming at him no. When our body is in a state of inflammation, that can lead to disease. So if you keep putting your body through inflammation over and over and over again, it can lead to disease. So I was actually gobsmacked that both of the gastroenterologists that we saw said to him or said to us it's not as bad as celiac disease. When he's older and he goes out with his mates, if he wants to just go and have some takeaway or, you know, eat some gluten, it's not going to hurt him too badly. And I was like what? That is not right. That is actually not good advice. So we've gone completely against that. We don't let him have treats. We don't let him have a little bit of gluten. He doesn't want it. He actually is very on top of his food intake. He questions everything.
Speaker 1:So if you have a child that is showing symptoms of celiac disease and you have celiac disease yourself, definitely look into getting a celiac disease diagnosis before, assuming that they have non-celiac gluten sensitivity. We always want to aim for a celiac disease diagnosis or to be able to rule that out. Some people do believe that when you have a celiac disease diagnosis, you will take it more seriously than what some people refer to as an intolerance or a sensitivity, which is, in fact, non-celiac gluten sensitivity. That's the correct terminology of it. But, like I said, it does cause inflammation which can lead to disease further on down the track. So either way, it needs to be taken seriously. It's not something that you know one's better than the other. I think they are both to be taken as seriously as each other.
Speaker 1:Now, if you are living with celiac disease yourself, then you know how you feel. With celiac disease. There is no person that should be eating any amount of gluten with celiac disease. And once you've got non-celiac gluten sensitivity, if it's your child or a loved one or a friend, whatever, same, they shouldn't be eating any gluten whatsoever. So if you've been to your doctor and your doctor has said, no, you do not have celiac disease, or no, your child does not have celiac disease, you're fine. But you know within yourself that you react to gluten. You know that when you cut back on gluten, you feel a lot better. You know that when you did your six weeks of eating gluten to be tested that's how you've got to be tested by eating six weeks worth of gluten you knew that you felt worse. Right, and you know that you've definitely been able to rule out a celiac disease diagnosis.
Speaker 1:Then this is what I would be looking at. I would be saying, yep, I'm reacting to gluten. It doesn't make me feel well, I am going to treat it as non-celiac gluten sensitivity, I'm going to cut out gluten, I'm going to be all over the cross contact, I'm going to be as careful as possible, and then you will start to feel better. Okay, it's the same as with a celiac disease diagnosis. So with non-celiac gluten sensitivity, the difference is your body is not attacking itself like it does with celiac disease. So with celiac disease, when someone consumes gluten, their body literally attacks itself. Okay, it attacks the tissues and cells, whereas with non-celiac gluten sensitivity, it's not doing that. It is doing other things with the inflammation, but it's not attacking the tissues and cells. So there is a difference there.
Speaker 1:However, I would still be looking at treating it very, very seriously and looking after your health. It's one of those things like why do we want to make ourselves feel rubbish when we have the answers? When we know that when we eat gluten we feel crappy, why do it? So I hope this gives you some insights into the difference between celiac disease and non-celiac gluten sensitivity and to help you really make sure that you're getting answers from your doctor when you're going and get tested. And if you feel like you've been tested for celiac disease and you got a negative result but you still think you've got celiac disease, you have every right to be tested again.
Speaker 1:I highly recommend you go back and listen to the episode where I explain the ins and outs of how to get a correct diagnosis if you are celiac, because so many people get either misdiagnosed, which means they're diagnosed with something else completely, or they are incorrectly diagnosed, which means they are told they do not have celiac disease, but then years later they get a diagnosis, and this is generally because they haven't had the test done properly, and that is mostly due to you not being told the right information about what to do in the lead up to your blood test.
Speaker 1:So go back and have a listen to to that it might just inspire you to go and get tested again and get some answers. But if you've done that and you know you've done all that correctly then I would be looking at non-celiac gluten sensitivity a little bit further and finding out if that's what's going on for you. So thank you so much for listening. If you've got any questions, make sure you pop them below. If you are on YouTube, or you can head on over to Instagram at the healthy celiac and send me a message there and I can answer them for you. So thanks for tuning in and I look forward to talking with you again next week on the show. Take care bye.
