My Coeliac Disease Diagnosis Journey, Living Gluten Free & Why I Started A Gluten Free Podcast

New product alert gluten-free fam, well and good just release their raspberry coconut slice mix and it is so good. Not only did we love it, but our daughters both ask for seconds. Inspired by a much loved family recipe, the gluten-free raspberry coconut slice mix is designed to deliver a nostalgic bakery-style slice at home with minimal effort. Perfect for morning tea, RVOT, or the school lunchboxes, the kids will love it. Available in Woolworths and select IGA stores. Go grab a packet yourself today, whip it up, and thank me later. [Music] Hey, welcome to a gluten-free podcast. The show will be exploring all things gluten-free. I'm your host Ben. Whether you have silly act disease like me, you're gluten-free for other reasons, or you just want to learn more about the gluten-free diet, then this podcast is for you. Let's get into it. Before we get started, I just want to mention a few things. Firstly, I want to take this time to truly acknowledge this beautiful land of Gundungara country, specifically the southern highlands on which my family and I have the privilege to live on and also which this podcast is recorded. I would like to pay my deepest respect to Aboriginal elders, past, present, and emerging. I commit to learning more of Aboriginal culture, the Gundungara people, and my own relationship and connection to country. I also want to preface this chart by adding that I'm not a medical professional in any way, so please seek out your own personal medical advice. [Music] Hi, everyone. I'm Ben, and I am 32 years old. I live on Gundungara country in the southern highlands of New South Wales, Australia, with my beautiful wife, two daughters, and one highly energetic and smart dog. I want to be honest and share my story up front with you because I know how hard it was when I was first diagnosed with silly act disease. I felt isolated, I felt overwhelmed, and I felt like it was something that I was just going to have to learn to live with by myself. I really didn't think there would be so many people out there like me, and I thought I was going to be totally alone in my journey. I couldn't have been more wrong. But before we get into that, let me take you back to last year when my silly act symptoms just started. My silly act symptoms began when my daughter caught a gastro bug at the beginning of 2020. She passed it on to my wife and I inevitably, and they both fully recovered in a couple of days, but I continued to have bouts of sickness throughout the year. I started developing pains from eating certain types of food, and I began losing heaps of weight. I lost around 10 kilos throughout the year, and I'm only a small guy to begin with. Friends and family would comment that I looked frail and gone, and I definitely agreed. I felt horrible, and yeah, I just looked like a skeleton in my form myself, really. I started keeping a food diary and found that eating certain foods like breads and pastas, pizza and ice cream and beer would make me feel really bloated and very sick the following day. I'd get random stomach aches, sometimes straight after eating those foods, and others they would come on gradually over time. My doctor had a really hard time discovering the cause, but was almost certain it wasn't food related and urged me not to change my diet whatsoever. I was sent for every test under the sun, a stool test, ultrasound, MRI, CT, and had regular blood screening carried out as well, and they all came back normal. The only irregularity was slight markers on the liver, but my doctor said that was to be expected, given the amount of virus imposed on my body, which had presumably been causing all of my sickness. Last year in 2020, COVID-19 had just started to rear its ugly head among us, and it was a super strange time to be going through this as the world was becoming more health conscious than ever. I drive to the hospital and doctor a few times with unbearable pain, and I was worried I'd be sitting amongst people with carrying COVID, but I needed an answer, and when I was seen to the pain would just ease. I began to think I was going crazy and just becoming a hyperchondriac. I had so many symptoms, weight loss, headaches, migraines, stomach pains, brain fog, constipation, diarrhea, joint pain, back pain, anxiety, huge mood swings, especially anger, and the list just goes on. I had all this horrible pain, but then I was just told that nothing was wrong with me, and I felt exhausted, mentally and physically. And this time a friend of ours suggested having a Celiac blood test done, and she was diagnosed in 2019 with similar symptoms. I ran it by my doctor who agreed, and the results came back literally off the charts. I can remember sitting there as my doctor was telling me I had Celiac disease, I think she was just as shocked as I was. She stared at the computer and just said, "So it turns out you're severely Celiac. My results were above 250, so literally off the charts." She urged me to stay on gluten, do the gluten challenge, and have a biopsy done after six weeks. She also told me to sign up to Celiac Australia. Celiac Australia have helped me so much. Their support and membership package, quarterly release magazine, and all the research and funding they do for the Celiac community is amazing. I highly recommend signing up to them if you're an Australia. They're not only a great resource for the person diagnosed, but also for family members and friends of those diagnosed, and they can learn more about how to help that person along their Celiac journey. If you don't live in Australia, I'd urge you to seek out your own country's Celiac disease organization. When I got home from the doctors that day and explained to my wife that I had a positive Celiac blood test, we hopped online and began doing as much research as we could. After signing up to Celiac Australia, we saw that they had some awesome tips online on their website for avoiding cross-contamination. If you don't know what that is, it's when gluten-free food becomes contaminated by either direct or indirect contact with gluten-containing foods. You can read way more about this on the Celiac Australia website, and yeah, I'd urge you to go and check it out. We started clearing out all the gluten-containing products, as well as all the may contain gluten products, which really shocked us. We literally gave hundreds of dollars worth of food to my in-laws, and they didn't complain about that. We made a little cupboard area to keep the gluten-containing foods for my wife and toddler. We bought a new toaster, we cleaned all the surfaces and drawers and all of that. It was also around this time that the friend of ours who urged me to ask my doctor for a Celiac blood test, who helped me get diagnosed in the first place, came over to sort of calm my nerves about the positive blood test and how she had dealt with the first year of living with Celiac disease. She explained that it's really not that bad, but it does suck at times, and she gave some awesome tips and advice for dealing with everything. So I was on my way to starting my Celiac journey, but that one thing had to come first. The gluten challenge. The gluten challenge is the process of consuming a minimum of four slices of wheat bread, or the equivalent of this amount and other gluten containing foods. Each day for six weeks for adults and a bit less for children, prior to an endoscopic biopsy to diagnose Celiac disease. This is really important to be carried out properly to ensure reliable test results. As Celiac Australia say on the website, do not commence a gluten-free diet prior to being tested for Celiac disease. As my doctor told me not to change my diet back before I was getting tested, I really should have listened. Instead I took a DIY approach and was actually partly gluten-free before I went for the blood tests. I ate a whole lot of gluten before I went for the blood test and the symptoms were really bad then. I remember the lead up to Christmas and booking in for my endoscopy. The receptionist for my gastroenterologist asked, "Would you like to make the booking for the new year so you can have a merry Christmas and eat what you want?" By that stage there was no way I wanted to eat any more gluten and have those horrible symptoms over Christmas. I just said, "Book me in as soon as possible." They booked me in and I had the operation. It was so easy, literally painless and takes between 15 minutes and half an hour. They put you on a general anesthetic so you don't have to worry and you don't have to be anxious about having it done. I had never been put on a general anesthetic before so that was the only thing that I was really nervous about. I was told by the surgeon prior to the operation that the blood test results were so high that he knew I would be Celiac but just wanted to check there was no malignancy. He did the biopsy and as he said, it came back definitely Celiac disease. I still had villa but they were really small and blunted. I had the positive Celiac diagnosis on December 18th, 2020 and so began my gluten-free journey. I really don't think it is doctors or medical professionals fault for not diagnosing celiac disease or testing for it, it's just such an undiagnosed disease, not only in Australia but worldwide. It's estimated that it affects one in 100 people worldwide and one in 70 Australians live with it, but 80% gone diagnosed. So if you were like me prior to diagnosis and you're asking yourself what is celiac disease, I'll give you a really brief description. It's a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. When people with celiac disease eat gluten, which is found in barley, rye, oats and wheat, the body forms this immune response that attacks the small intestine. This leads to damage of the villi, which are these small finger-like projections on the inside of the intestine, which promote nutrient absorption into the body. And when those villi get damaged, then the nutrients can't be absorbed properly into the body. Untreated celiac disease can lead to so many health issues, including thyroid disease, diabetes, arthritis, anemia, miscarriages, lactose intolerance, gastrointestinal cancers. It's just so many liver problems, problems with your nervous system. It can affect your skin and mouth and it can lead to some horrible diseases, like as I mentioned, cancers and lymphomas. I had no idea about celiac disease. I hadn't even really heard of it before diagnosis, but I'm so glad that I have had a diagnosis so that I can hopefully avoid a lot of those health issues down the track. So that's a brief description of what celiac disease is and why it's so serious and why it really needs to be taken seriously. I had no idea there was such a massive celiac disease community, not only here in Australia, but worldwide, and people who are gluten free for other reasons as well, not just for celiac disease. I found some awesome people and resources along the way, which I'll share with you in the coming episodes. But finding these people and the resources have helped so much. Those first few months, I felt so overwhelmed and finding others who are going through a similar experience absolutely changed my whole mindset about it. I found it hard to speak about my health and feelings in the past, but this diagnosis has really forced me to and to be upfront about everything that I'm going through. And I think as men, we often feel pressure culturally to not express our vulnerabilities and weaknesses, but I think that's just part of a left over toxic culture that we really just need to get over it. Men should never feel ashamed or embarrassed to visit a doctor to talk about their physical or mental health. Celiac disease predominantly occurs in females, but I really do wonder if that has something to do with men not being comfortable with coming forward and speaking to a health professional about their health issues. So since being gluten free, I've way more energy and time to spend with my wife and daughter. And I started cooking and baking so much more than I used to, which I'm absolutely loving. My wife and daughter are really liking the food that I'm making, which is so good. There are so many gluten free books and recipes out there. And it's all really a bit of trial and error for me because I make some food that's good and I make some food that's bad and I'm making mistakes all the time, but I'm always learning from it and I'm loving that process. This December, it will be one year since my Celiac disease diagnosis and being gluten free and that has gone so quickly. There's been many, many ups and downs. It's been an absolute rollercoaster of a ride. It's been intense. And I'll probably chat about a few mistakes I've made along the way. I've been glutened a few times, as we say in the Celiac community, when we've ingested gluten accidentally. And it was silly stuff. It was not knowing the right information or questions to ask and I did it early on and I've learnt from those mistakes and I feel like I've grown from them too. Since my diagnosis, it's definitely made me realise so many things. It's made me reassess my relationship to food and looking more at food as fuel rather than things I'm just chucking into my body. It's also allowed me to see who truly cares about me, especially my family and friends. It's pushed me to become a really keen cooker and baker and I'm loving that. It's shifted my perspective of life and I'm actually really grateful for it. Like sure, I'd love to eat whatever I could and not have to worry about ever dining out again and asking all those questions and being so careful to not get cross contamination and be glutened. But I never want to feel the way I did back when I was having all those symptoms. Looking back through my life in my teens and early 20s, there definitely would have been signs of celiac disease but I didn't know what to look out for and I can't really think that way. All I can do is think, look, I have a celiac disease diagnosis now and how can I be the healthiest version of myself now. Rather than focusing on how much damage I possibly could have done to myself with having untreated celiac disease in the past, there's no point. I'm working on myself now to become a better father, a better husband and a better friend to everybody around me. That's what I want to do and focus on now. I know that the gluten-free diet is such a challenge. It really is. It's hard to stick to and be persistent with but I've learned a lot of things along the way. Even in one year I've learned so many things and I've met so many great people and heard so many awesome stories and I hope to share a lot of that in this podcast with you. Throughout COVID-19 it's been really hard to reach out to other celiacs in my local community and that's why I started the Instagram account. I gluten-free family. I post about my journey, gluten-free recipes, dining out, what I'm learning and connecting with others and hearing their own stories. There's a really great gluten-free community online and I'd urge any people in the celiac or gluten-free community to use those social media platforms. For me it's provided a great insight into how others deal with this illness worldwide and it's given me such an awesome opportunity to understand why others are on the gluten-free diet and how that helps them in their lives. So that's my diagnosis story and that is why I am gluten-free. I've started this podcast because I really think that celiac disease and the gluten-free diet in general needs way more attention and awareness. There's still so little known about celiac disease and the gluten-free diet. And being diagnosed with celiac disease or any autoimmune condition for that matter, I'm sure it's overwhelming and it can really feel like too much. It's my hope that this podcast can make you feel not so alone in your gluten-free journey. There's definitely things that people don't generally talk about with the gluten-free diet and I hope to touch on a few of those things with this podcast and I hope you can take something away from each episode. Thanks so much for taking the time to join me here on a gluten-free podcast. If you're enjoying it and think someone else with two, please share it with them. Also, I'd really appreciate you giving a rating and review on whatever podcast and platform you're listening on. You can find me on Instagram at a.gffamily or send an email to a gluten-free family at gmail.com. I'll add all this info in the show notes. Until next time, bye for now.