The Healthy Celiac Podcast

Breakthrough Blood Test Could Change Celiac Disease Diagnosis Forever Ep. 212

• Belinda Whelan • Season 1 • Episode 212

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In this week’s episode of The Healthy Celiac Podcast, I’m diving into a new breakthrough coming out of Australia that could completely change the way coeliac disease is diagnosed. Imagine a future where you don’t have to eat gluten again just to get a diagnosis. That future might be closer than we think.

I’m sharing all the latest on the new IL-2 blood test being developed, what it means for people who’ve already gone gluten free, and why it matters so much. Plus, I open up about my own experience with diagnosis (and my kids’ testing journey too), and the frustrating realities many of us face just trying to be heard. This episode is packed—so if you’ve ever struggled with getting answers, you won’t want to miss this one.

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Speaker 1:

All right, welcome back to this week's episode of the Healthy Celiac Podcast. Today, I want to share something with you that I think is incredibly exciting and, honestly, this is so long overdue in the celiac world like seriously could be a game changer. This is all about how we may be able to diagnose for celiac disease in the future for those people that, especially have already gone gluten-free and don't want to risk getting sick again just to get further answers. So the big news that has come out of Australia in recent weeks has been that Australian researchers are developing a brand new blood test that can detect celiac disease. Get this without needing a gluten challenge. This is huge, okay. So yes, you heard that right a brand new blood test that can detect celiac disease without having to consume gluten in the lead up to that blood test. So this blood test doesn't require you to eat gluten ever again. So if you've gone through the traditional testing process, you'll know that this is huge. This is such a big difference for the future of testing of celiac disease. So I want to walk you through what's currently required to get tested. I want to tell you about my journey with my kids and then also talk about what could happen in the future.

Speaker 1:

So right now, the gold standard for getting tested for celiac disease involves two main steps, I guess we could call it. So. The first step is a blood test, and that blood test is done to screen for antibodies and then a follow-up biopsy of your small intestine to confirm the damage. Now, both of these tests are usually only accurate if you're still eating gluten. So the problem with this is, if you've already gone gluten-free because you either suspect celiac disease or you just know that you feel better not eating gluten, then you've been told you have to go back to eating gluten, usually for about six weeks prior to that testing, and I know for a lot of people it's just not possible. Just so many people realize how much better they feel without eating that gluten and some people try and go back on eating gluten and it just, it just is too hard. It makes them feel sick, it makes their life miserable, it's hard to go to work, it's hard to study, it's hard to parent. So a lot of people cannot follow through with it and honestly I don't blame them, because I noticed how much better I felt when I went gluten-free after my actual diagnosis, that I couldn't even go back on gluten to do the scope. So my blood levels were so high that my doctor and my gastroenterologist both were in agreeance that my bloods were enough to diagnose my celiac disease. So things have changed. Now Some people say that they still get a diagnosis just from the blood test, but many people say that a lot of doctors and gastroenterologists won't give a confirmed diagnosis without doing that biopsy. So yeah, it's very interesting. So this is what stops many women and men and children from getting proper diagnosis. And you know, I speak to women all the time who say that they feel better when they don't eat gluten and they just can't bring themselves to doing that test.

Speaker 1:

And you know, this is exactly why this new blood test is so exciting. So I hope I pronounce everything correctly, but it is being currently developed by the Walter and Eliza Hall Institute of Medical Research in Melbourne here in Australia, and it's in collaboration with Nova Via Pharmaceuticals. So what they've come up with is a test that can detect immune markers in your blood even if you haven't been eating gluten for a while. So how does this work? So the test focuses on identifying something called interleukin-2, or IL-2 for short. Now this is a substance that your immune system releases when it's exposed to gluten, if you have celiac disease. Now the clever part is, even in people who are on a gluten-free diet, the immune memory still lingers, and by using a small dose of gluten in a very controlled way, the researchers can pick up on the response through this IL-2 marker with just a few hours. So this means you don't even need to be eating the gluten for weeks prior. So in one of the studies they tested 181 people. Some had diagnosed celiac disease, some had non-celiac gluten sensitivity and others were healthy controls, and the new blood test showed a 90% sensitivity and 97% specificity. So that's pretty awesome for an early stage test, now when we consider that it worked on people who hadn't even been eating gluten prior to that test.

Speaker 1:

So one of the researchers that has been involved is Olivia Moscatelli, and she actually has celiac disease herself and she has shared that her own diagnosis journey was long and painful, which so many of us can understand and recognize, if that's been your journey as well. And because of this, this project is something very close to her heart, and she's wanting to spare others the trauma of going through the gluten challenge just to get a celiac disease diagnosis. So you know, as someone who works closely with women myself who are newly diagnosed or in you know that uncertain space of what on earth is wrong with me I know how incredibly valuable this could be for the future of testing. And it's also really validating right, because so many people are told that they must do the gluten challenge for a proper diagnosis and when they refuse, it's like their symptoms and their experience are dismissed. Because I've spoken to women who feel like their doctors. You know they didn't even take them seriously because they'd already gone gluten-free and then they were able to make it feel like it was their fault that they couldn't get the right testing. So this is, you know, this is not how it should be. So this new test flips everything on its head.

Speaker 1:

Now I do want to just be really clear here. This test isn't available just yet for public use. It's still going through trials and further research to make sure it's accurate and safe across a wider population, but the progress is looking really, really promising and they hope to have it rolled out in the next couple of years. So what does this mean for right now? So if you're listening to this now and you're already gluten free, you've already gone gluten free but you never got a proper you know formal celiac diagnosis. Then you know I know how hard it is to try and do the right thing for your health and you know maybe hit a wall in the medical system because you don't have that diagnosis. So you know a doctor might have not taken your symptoms seriously. Or you know you've been told you had to eat gluten again. You couldn't face it. Well, this new blood test could be the breakthrough that you have needed this whole time. So I'll definitely keep you updated as more info comes out and as soon as it becomes available, you can bet I'll be shouting it from the rooftops because this is such a huge development in our world of celiac disease.

Speaker 1:

Now I also just wanted to throw in the story of my kids when I've done their testing, because it's so interesting how it has gone about and how I feel that this blood test is such a game changer, specifically because of how I've seen it play out with my kids' testing. So my son, reef he was the first one that we suspected had celiac disease. My eldest, akira we had her tested when she was younger. She showed the gene for it but she had no positive towards the antibodies. There was nothing showing that she had celiac disease.

Speaker 1:

Then, years on, after her initial testing, she was presenting with something really strange going on with her hands and we had to go to multiple doctors and appointments and in the end they thought it was rheumatoid arthritis, which was just heartbreaking because she was a very, very amazing athlete in the gymnastics world at that point in time and that was very heartbreaking to hear that that could be what's happening for our poor daughter. And because of the way it was presenting on her hands, I was worried that she perhaps had a skin condition related to celiac disease. And they fobbed me off. The doctors were just like, no, no, no, no, we think it's this, we think it's rheumatoid arthritis and she would have this, that and the other wrong with her if it was celiac disease. And I was like, well, let's just rule it out, let's just rule that out so that we know for sure that this is not something because of celiac disease. Because I have celiac disease myself, I honestly had to push for that blood test. So as a doctor, wouldn't you want to rule that out because you know that's in that person's family? But anyway, lo and behold, it wasn't that.

Speaker 1:

Now, just recently, my daughter same daughter she has been dealing with another skin condition going on her entire body and the first doctor she believed it was one thing. I'm not going to share what that was online because that would be embarrassing for my elders, but we were given a cream for it, which is the only treatment for it. We tried that cream for a couple of weeks. It didn't help. We went back to the doctor and then she believed it was dermatitis. So as soon as I heard the word dermatitis, I piped up and said, well, if you think it's dermatitis, I would like for Akira to be also tested again for celiac disease. And she was like, uh, looking at me like I was an idiot. Uh, no, this is just a skin condition. I think we can just clear it up with a cream, maybe some antibiotics. I was like, yeah, but you just said you think it might also be dermatitis. Now dermatitis is linked to celiac disease and I personally have celiac disease. Akira carries the gene for it, so I would like to rule that out as well.

Speaker 1:

While we're going, I'm happy to try the cream, happy to try the antibiotics, but I would also like the blood test. She turns from me, looks at my teenage daughter and goes do you have diarrhea? Kira goes, no. Do you have a sore tummy? No, she turns back to me really like smart ass and goes she doesn't have celiac disease. Oh, I was so mad I had to compose myself. My daughter side-eyed me like oh God, here we go. Mom's going to, mom's going to lay into this doctor. So I controlled myself and I was like no, I'm really sorry, but that's actually not true. There are hundreds of symptoms of celiac disease and the ones you've mentioned are only two. And there are so many other symptoms that have nothing to do with diarrhea and tummy problems. And the thing is that dermatitis is actually a symptom of celiac disease. So I would like the blood test done and just to be able to rule it out while we're going.

Speaker 1:

She did not look happy with me, so she turned back to her computer and she typed out her prescription that she had recommended for my daughter, printed it out and handed it to her and I just sat there. I'm like, okay. And she goes is there anything else? And I'm like, yes, I'd like the referral for the blood test please. She goes oh, so you still want that? I'm like yes, yes, I do, thank you. So she very abruptly printed out and kind of handed it to me and sent us on our merry way. But I could not believe that that was her attitude. She just completely dismissed my daughter's one symptom because she thought she knew better. Now we are living in 2025 and I know more about celiac disease than this particular doctor and many, many doctors. It is frightening, but I feel like if we had this blood test that it's just a simple blood test send them off and be on a merry way it would make life so much easier.

Speaker 1:

Now I want to also talk about my other daughter, who I had tested for celiac disease earlier this year. I have never suspected any of her symptoms or anything that goes on in her world to be related to celiac disease, apart from her behavior, because behavioral issues are also linked to celiac disease. So she's a third child, she's just finding her way, and I just thought, hmm, let's just rule this out, because I speak to so many moms and dads that say that their kids are terrible when they have gluten. Then they don't have gluten and they are like another child. So I thought, hey, this is worth looking into and finding out whether it's celiac disease. So I went to the doctors and I explained that I wanted to just rule this out or at least know whether my youngest carries the gene for celiac disease. Because the thing is, if you go and get tested for celiac disease and you have the gene for celiac disease, well then you need to continue testing. You know, maybe every three years or so is a good idea to just go and get tested again for celiac disease, right, because you can have the gene but the gene's not triggered. So I wanted to know hey, does my youngest have the gene for celiac disease? Because I know my other two kids do now and they don't have triggered celiac disease. So I wanted to know hey, does my youngest have celiac disease or does she have the gene for celiac disease? I specified to my doctor and when I say my doctor, not my amazing doctor, this was just any old doctor I could get in with I specified to the doctor. I said I want to get the celiac serology test done for my youngest and I want to get the gene test done to see if she carries the gene. Yeah, no worries, it's a whole heap of waffle on the page. It's so hard to understand if you're not a doctor, but it looked like what I'd requested.

Speaker 1:

My husband and I took our youngest to get her blood test. We put numbing cream on. She was traumatized. If you've ever had to take a kid to get a blood test, they freak out, they move around, they don't want to get it done. We bribed her with a toy and we let her look on the phone, you know, to watch a TV show or something like that while she was getting it done. And, lo and behold, we get the results back and they hadn't even tested her for the gene. They had just done the celiac serology test. They hadn't tested her for the gene.

Speaker 1:

So at this point I don't even know if my poor youngest carries the gene. So it's something that is still like how annoying we could have found out there and then whether we still need to get her tested. She may not have the gene, which means we don't need to continue testing, but if something else comes up for her now it's going to be in the back of my head hey, hang on a minute. This could be a symptom of celiac disease. Need to go get tested again. So that's kind of been my journey with my kids. It's been an absolute pain in the butt. If you ask me and this is coming from me who I know how to do all this. I know how to get tested, I know what to ask for and even when I'm requesting it, I'm being fobbed off and my kids haven't been given what they needed for the correct testing. So it's just frustrating for the correct testing. So it's just frustrating. So I think this new blood test could be an absolute game changer. So, like I said, once I know more, once more comes out about it, I will definitely be sharing it, because it's not just going to be something here in Australia. It will go global. It will definitely be something that will become a worldwide. That's the standard blood test.

Speaker 1:

Now I just want to take a moment, as a health coach who works with women with celiac disease, to acknowledge that this is a massive emotional weight. Getting diagnosed isn't just about ticking a box or putting a label on your symptoms. It is honestly about that validation and that clarity and being able to move forward with a diagnosis and knowing that you have to take yourself seriously and for others to take yourself seriously. So you know, I see so many women who are stuck with this. They're doing everything right, they're eating gluten-free, they're reading labels, they're trying to heal, but they don't feel great. So sometimes this is because they never got the full picture to begin with, so they were never properly tested, they were left guessing and their health suffered because of it. So if this new test can help just one woman get the answers that she deserves without going backwards and getting sick again, then I think that's a huge, huge win. Now, that's it for today's episode.

Speaker 1:

I honestly hope that you found this really helpful or exciting, especially if you've got kids Like. It will make it so much easier for our own kids to be tested, just with this one simple test, not making them have to eat gluten, which is what we had to do twice for my son. We had to do two six-week gluten challenges for him. It was horrible. So, yeah, if this has been helpful, please I'd love you to share it with someone who might be in that pre-diagnosis stage or someone who suspects that they are celiac and they've been too scared to get tested, because this test might just change everything in the near future.

Speaker 1:

So if you're looking for support right now, whether you've been diagnosed for years or are still figuring things out. Please come and check out my brand spanker of a program, the Healthy Celiac Collective. It is designed to support women just like you in their stages of healing, rebuilding your health and feeling confident navigating gluten-free life without feeling that overwhelm or deprivation. So you can jump on the wait list now or reach out if you have any questions. I'll pop the link below, but otherwise you can go to belindawheelancom forward slash collective. So thank you so much for listening and I look forward to talking with you again on next week's show. Have a great week, Take care Bye.

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Belinda Whelan

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