Things Doctors Don’t Explain After a Celiac Diagnosis

You finally get diagnosed with celiac disease. 

And in some ways… it’s a relief. 

You have answers. 
You know what’s been causing your symptoms. 

But then… you leave the appointment. 

And suddenly you’re thinking: 

Wait… what do I actually do now? 

What can I eat? 
How careful do I need to be? 
Why do I still feel off? 

And no one really walked you through it. 

In this episode, I’m going to share the things doctors often don’t explain after a celiac diagnosis— not because they don’t care, but because there’s just so much that doesn’t get covered. 

And by the end, you’ll feel more prepared, more confident, and a lot less alone in this. 

 This episode is brought to you by Find Me Gluten Free—your go-to app for discovering safe, gluten-free dining options wherever you go!
Get your exclusive discount for our listeners at theglutenfreeengineer.com/findmeglutenfree
Because dinning out gluten-free shouldn’t be a guessing game! 

Transcript

Disclaimer And The Post Diagnosis Gap

Carrie Saunders 0:00

Quick reminder before we get started on this episode. This podcast is based on my personal experiences and isn't medical advice. You finally get diagnosed with celiac disease, and in some ways it's a relief. You have answers, you know what's been causing your symptoms, but then you leave the appointment. And suddenly you're thinking, wait, what do I actually do now? What can I eat? How careful do I need to be? Why do I still feel off? And no one really walked you through it. In this episode, I'm going to share the things doctors often don't explain after a celiac diagnosis. Not because they don't care, but because there's just so much that doesn't get covered. And by the end, you'll feel prepared, more confident, and a lot less alone in this. Let's dive in. Welcome to the Gluten Free Engineer Podcast. I'm your host, Kiri Saunders. In 2011, I was diagnosed with celiac disease, a moment that changed everything. But I was determined not to let it hold me back. With my two engineering degrees, I set out to reverse engineer the gluten-free lifestyle, breaking down recipes, safety tips, travel hacks, and everything in between to rebuild a life I love. Whether you have celiac disease, gluten intolerance, or simply choose to live gluten-free, this podcast is for you. Join me each week as we simplify the gluten-free lifestyle, make it fun, and prove that you don't have to miss out on anything. Welcome back to the show. Today we're talking about things doctors don't explain after a celiac diagnosis. For some people, a celiac diagnosis is it just feels like the end of the world to them. For other people, it feels like a relief. For me, it felt like a relief. I finally had some explanations as to what had been going on the past several years of my life, and really, if I look back pretty much all of my life, it is the turning point. But it's also the beginning of a new learning curve. Doctors often focus on diagnosis, not day-to-day life. This isn't about blaming doctors, and it's about filling in the real life gaps because many times the doctor that diagnosed you may not be the expert in celiac disease, so you might need outside doctors, nutritionists, or other help to get you through the first stages of what do I do after I'm diagnosed with celiac disease? I know when I was diagnosed, even though as a gastroenterologist, I wasn't given much information. You know, it was like avoid gluten. Oh, okay, great. Like if you don't know what that is already, there's this huge question mark above your head because you some people don't realize gluten is found in multiple grains. Wheat, barley, and rye are the most common, but there are other ones, and some of them are really hard to pronounce. But there's other versions of wheat and other versions of grain that you know have gluten in it. So people can sometimes think, you know, you just avoid bread, pasta, and obvious gluten, but you're not really told clearly that cross-contamination does matter, shared surfaces matter, and even small amounts can matter. Gluten-free is just not about ingredients, it's also about the environment your food is in. We have quite a few episodes on cross-contamination and how to avoid it, and about small amounts and things like that. So go make sure you look up our other episodes of our podcast to go over that a bit more in detail. Now, in the next point I want to talk about is a lot of doctors don't let you know that you may not feel better right away. You might think, okay, I'm removing the thing that makes me feel bad. I'll feel great right away. But that can surprise a lot of people, but that that doesn't always happen. Most of us need several weeks, months, and years to heal. For me, it, you know, each week I felt better, but it was all very incremental. Think about it. We eat gluten over our lives, and you know, depending upon when your celiac kicks in, you know, you may have been suffering for years and years and years and not even realize it because it's a slow, um, I feel like it can be so slow in making you feel bad. It's not like when you first eat gluten, you're like your body like freaks out. Many times you don't really notice, or you might dismiss it, think it's something else. You know, if you have a digestive issue or a headache, you're there's so many reasons you can have digestive issues or headaches, you know, kind of the com most common symptoms of celiac disease. And and so that healing can take time because you've likely damaged your body over years and years and years. And so it's going, it's just like, you know, when you if you put on a decent amount of weight, it takes, you know, that happened over time. It takes a while to get that back off healthily. It's kind of similar to celiac. You've been eating gluten for a long time, likely. And then it takes a while for that healing to happen once you've gone off of it. So your symptoms can linger and inflammation doesn't disappear overnight. That's just not how our bodies work. So, what you need to do is pay be patient and celebrate those small wins. I found, you know, the first few weeks, my goodness, I felt better. And then I would notice every several months or so, and then once I started really getting healed, about every six months or so, I would kind of look back at the previous six months and think about how much better I felt than six months ago. Sometimes it, you know, once you get more healed, you'll have you'll need more time to pass to, you know, recognize that you felt better. So going gluten-free is the start of healing, it's not really the finish line. You also may, you know, notice that your symptoms might change. You might expect that your symptoms are going to disappear, but in reality, symptoms can shift and new sensitivities may appear, and reactions may feel different. We have some episodes on delayed reactions, and I found out that many times for me it wasn't actually a delayed reaction. I was also sensitive to soy and it caused similar issues as when I get gluten. So you might notice you're going to find other food sensitivities once you've healed and stopped eating the gluten that you that that it was the main trigger. I also found that the more I was healed, the more a tiny bit affected me. So just note that this is an ever-healing, ever-changing situation when you have celiac disease and you've gone gluten-free and you're starting to get better. It's just everything can, you're not crazy. Everything can change, things can shift, your symptoms may be different. For me now, if I get a little bit of gluten, I worry more about the migraine than I do the stomach issues. My stomach is much more um less sensitive, I would say. It's less sensitive than to a little bit of gluten than it used to be. Um, but I will get like a really terrible migraine that that medicine just doesn't even touch. Another thing doctors don't really tell you is that food becomes complicated. No one really prepares you for label reading unless you go to a dietitian usually. Uh, you might start questioning everything. Social situations can get really awkward and weird, and you might have some a lot of decision fatigue trying to figure out what to eat. Make sure you listen to our podcast episodes on the social situations. We have quite a few on social situations as well as reading labels and you know, about not feeling super crazy. So the key is not just a diet change, it really is a mental shift. And once we get our brains around that, that can help us really cope with the emotional side of finding out you have to be gluten-free and completely restricting a large section of potentially your life. They also don't tell you that cross-contamination is a daily consideration, especially if you live in a household that has a shared food, that you have, you know, gluten and not non-gluten items in your food. And beyond that, you know, cross-contamination is in restaurants, other people's homes, pre-packaged foods there can be in there. And I actually have quite a few episodes too on the shared kitchens going other to people to other people's homes. And how do we deal with this? How do we read those packaged labels? So make sure you look those up in your favorite podcast app or on the glutenfreeengineer.com. And another thing that they don't talk about is that not everyone will understand. So many of these things doctors don't talk about is these emotional aspects and social aspects of it because it's probably not part of their daily life. They probably don't have celiac themselves, so they may not be thinking about any of these things. Um, so it's not not being derogatory. Oh, I want to, you know, reiterate that again uh to doctors out there. It's just the situation that it typically is that I've found. And so going back to the not everyone will understand, many times people will minimize it. People confuse it with a preference. You might need to advocate for yourself still. We have an episode specifically on what to say when someone doesn't take gluten seriously. So make sure that you check that one out to support you if you were in this situation where you feel like not everybody's understanding and it's making things really awkward and difficult for you. And then doctors also, you know, just don't have the time generally to teach that you need to build your own system. You need to, you know, change your meal planning, you need to understand what brands are safe, the routines. You might have specific routines to keep yourself safe, um, routines for keeping your kitchen safe for you and your kitchen set up for you. Because we're not just changing what we eat, we're also building a new way of living. And that can make, you know, uh any food allergy or celiac disease to really be a you know a big major event in your life. And so don't feel that you are being dramatic because it feels like such a major event in your life, because it really truly is. And then something else they also don't talk about much is the emotional impact is very real. There is so much frustration, overwhelm, feeling different, grieving old routines. These can be so real if you're celiac or have another food allergy too. The emotional side is something a lot of people don't talk about. They don't talk about it enough, which is why we have quite a few episodes on this. I just felt like it was so important to talk about the emotional sides of taking away a core thing that it just exists in the modern-day world in our foods, and it can just really make things difficult. So make sure you look up episodes on that as well because the emotional impact is real and you're not crazy, and it is very difficult at first. And then I want to encourage you that you don't have to figure it all out at once. I want you to first start simple. We have episodes on this where we just start with whole foods and don't eat processed foods, and then we want to build confidence over time of adding in, you know, safe, gluten-free processed foods for treats. Obviously, I try to encourage all of us, uh, me included, to eat as much whole foods as possible. It's just healthier for us. But you don't have to figure it all out at once. I want you to learn through experience. Be curious, not critical when you make a mistake. Um, you know, all be very healthy in your mental um you know, approach to this because it's just there's just so much that if you don't have celiac, that you may not get, you may not understand how overwhelming and how always on you are to try to make sure that you're safe and you're diligent. Um, I don't know how else to describe it, but just on, um, watching everything when you're out eating, um, paying attention at somebody's house, you know, how thing if things are got cross-contaminated, you know, all these little things, at least for my brain, have obsessed over for the past, you know, like 12 years. Obviously, as I've gotten further along, I'm not nearly as obsessed as I was, although I, you know, I'm still definitely very cautious. Um, so I just want to encourage you to take it one step at a time. Always make forward progress. If you make a mistake, give yourself grace, learn from it, and work forward from there. And I want to reassure you that you're not behind, you're not missing something, you're learning something most people never have to think about. Gluten-free is more than ingredients, and healing takes time, and your life really changes beyond food, and confidence will come with experience. At the end of the day, getting diagnosed with celiac disease is just the beginning. And while it might feel overwhelming at first, you will figure this out. One meal, one decision, one experience at a time. And if you want more practical tips and life guidance like this, be sure to join our Facebook group. Head on over to theglutenfreeengineer.com forward slash Facebook, where you can ask questions at any time, get advice on uh gluten-free brands and cooking tips. Thank you for listening to this episode of the Gluten Free Engineer. If you found value in this story, please share it with someone who might need encouragement on their own gluten-free journey. For more tips, recipes, resources, and even links to my YouTube channel, head on over to theglutenfreengineer.com. It's your one-stop hub to make gluten-free living simple, fun, and full of flavor. And don't forget to subscribe so you never miss out on an episode. And we will see you next week. The Gluten Free Engineer Podcast is for informational and entertainment purposes only. I share my personal experiences and stories about living with celiac disease and navigating a gluten free lifestyle. This podcast does not provide a medical advice. Always consult with a qualified healthcare professional for medical questions, concerns, or advice specific to your health.