The Questions I Wish I Had Asked My Doctor Sooner (About Celiac or Gluten Intolerance)

When I was first navigating celiac disease and gluten intolerance, I trusted that my doctor would tell me everything I needed to know. But looking back, there are so many questions I wish I had asked sooner — questions that would have saved me time, stress, and unnecessary symptoms. 

Today, I’m sharing the questions I wish I had brought to my doctor earlier, so you can feel more informed, more confident, and better equipped to advocate for your health. Stick around until the end, because I’ll share the question that completely changed how I approached my care.

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Chapters

• 0:00 Purpose And Disclaimer
• 0:35 Host Story And Show Framing
• 1:14 What Tests Were Run And Why
• 2:45 Do I Need Gluten For Accurate Tests
• 5:30 Advocate When Doctors Miss Celiac
• 7:18 What Healing Looks Like Over Time
• 9:05 Nutrient Deficiencies To Monitor
• 12:00 Which Symptoms Improve First
• 14:20 Cross Contact And Trace Gluten
• 17:10 If Symptoms Persist, What Else
• 19:35 How Often To Follow Up

Transcript

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. When I was first navigating celiac disease and gluten intolerance, I trusted that my doctor would tell me everything I needed to know. But looking back, there are so many questions I wish I'd asked sooner. Questions that would have saved me time, stress, and unnecessary symptoms. Today I'm sharing the questions I wish I'd brought to my doctor earlier so you can feel more informed, more confident, and better equipped to advocate for your health. Stick around until the end because I'll share the question that completely changed how I approach my care. Welcome to the Gluten Free Engineer Podcast. I'm your host, Carrie 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 the questions I wish I'd asked my doctors sooner. And the first one is which tests were run and what do they actually measure? Now, for me, this is a little bit tricky, and I'll tell my backstory under the next question. But I want you to understand that blood tests versus biopsies are very different. You need to be asking what blood tests were taken, what kind of biopsy was taken. You want to know what was and what wasn't checked. Because sometimes normal results don't always mean that there's not a problem there. So understanding, you know, what you get from your doctor, what tests you get, it's going to help you understand whether that could potentially be a false negative or not. Because many people are told that your celiac test was negative without knowing which tests were done. Was a full panel done, or did it just look at a little tiny snapshot of one little part of your body and you don't know if it was actually fully thorough? Because, for example, blood tests look for antibodies, they don't look for damage. So if you've only got a blood test, you may have not been eating enough gluten. And I'm going to go into this in more detail in the next section for that to be accurate. And then biopsies look for intestinal damage, but the timing can matter here. It doesn't scan your whole intestine. So if damage to yourself is patchy or healing has begun because you cut back on gluten, it can be missed. And some doctors only run one test instead of a full panel. They might just run the anti-gluten antibody test or without running like the anti-self is how I like to call it the one where you're attacking your own body uh antibody. So you want to ask, you know, what exact tests have they run? Because it can be confusing to hear normal without understanding what they meant. For me, that actually is what happened to me. And I'm going to go into that in section two, which is the second question is do I need to be eating gluten for these tests to be accurate? So for me, when I first went to get tested for celiac disease, I had actually been off of gluten for I think it was at least three or four months at the time, completely had removed gluten because I accidentally removed gluten, and then I found out I felt so much better off gluten. And when I asked my doctor at the time that I thought I should have been tested for celiac disease, and she decided to do a blood test. I even questioned her. I said, Are you sure this is going to be accurate? Because I haven't had gluten for months. And she wasn't informed. Many doctors aren't informed about celiac disease. Now, nowadays is much better than it was back then. That was like almost 15 years ago, as of this recording. But some doctors don't understand that you have to be having gluten in your system very regularly for a long time for them to be effective and accurate. And sometimes the blood tests just simply aren't accurate for people. So for me, I got a negative result in my blood test because I had removed gluten for a good four months beforehand. And that causes your body to start healing and you stop producing those antibodies. Remember, the blood tests look for the antibodies in your blood to see whether your body is fighting the gluten or not. So if there's no gluten to fight, there's no antibodies in the blood. So understanding what tests your doctor has done and what the requirements are around it can really help save you from misdiagnosis. This also can affect the biopsies. So when you get an endoscope, if you have not been eating gluten regularly for long enough, um, then it's going to potentially be negative because, like I said in the previous section, they take sample, you know, several different samples. And if they take the samples in the wrong places, maybe you started healing in some of the places because you reduced the gluten or taking it out, then they're going to get a false negative, especially if you're healing quickly. So you weren't really doing anything wrong if you have done this before, if you've gone off gluten and then got negative tests, you were just trying to feel better, just like me. So you try not to, you know, beat yourself up over it. And doctors don't always know or explain this clearly, especially if they're a general doctor and not one that specializes in gastroenterology. So you're going to want to make sure you do that. Now, I will cave out that to say that I should have been diagnosed as gluten with celiac when I didn't even have had my third child yet. So about 20 years ago, I should have been diagnosed if I'm doing my math correctly, because I went to a gastroenterologist because I was having so much stomach and digestive issues. And that one, I have no idea why. He did not test me for celiac disease. I went in for classic celiac symptoms. I didn't know what it was. I'd never heard of the word before. But and I trusted the doctor to do what was right. No, he just put me on medicine for irritable bowel syndrome. Didn't do any testing. So you need the moral story here is you need to advocate for yourself. You can just hear in this one episode, I had two doctors not do the right thing to help me get diagnosed and help me get healing sooner. Now, the doctor I have right now is great and works well with me, helps me with a dietitian if I need it, or see a specialist. She's a general practitioner. Um, she's great, but you've got to really advocate for yourself. And then another question I didn't ask at the time because I didn't know to, is what should healing look like? And how long does it take? So having realistic expectations on how quickly you're going to feel better can really help you in that process, especially from a mental standpoint, because you might get very disappointed, you might get very down and depressed if your symptoms don't disappear right away, and they're likely not going to. Some symptoms will definitely improve pretty quickly, potentially within days or just a few weeks. But some symptoms, some long-term symptoms, are going to take months, if not years. So healing's not instant. The gut, the immune system, the nervous system, they all are going to heal at different timelines. And it really depends upon your body's reaction to that gluten and you know, just your own body's healing process. We might you might find yourself healed faster in the immune system than the gut first, or maybe it's the other way around. You just have to be really patient with yourself and trust the process, especially if you've been diagnosed with celiac or you just know you have gluten intolerance and you just need to be off the stuff so you can feel good. Another thing that you should be asking is what nutrient deficiencies should we monitor? The many common ones, but do ask your doctor, are iron, vitamin D, B12, folate, and calcium. Those are very common ones to be low in if you have celiac or gluten intolerance. Now, iron can cause fatigue and dizziness if you're low in iron. Vitamin D affects your immune health and your bone health. I was actually so low in vitamin D. Um, I'm talking about going all the way back before I got diagnosed. I was so low in vitamin D that they were giving me 60,000 units. That's not a mistake. 60,000 units a day, four weeks, and my vitamin D barely, barely rose up. It didn't even get to normal. That's a lot of vitamin D, let me tell you. Um, B12 is also another one that you should have monitored. This can cause brain fog, this can cause nerve issues. This is what they think I had a problem with when I was pregnant with my third child was a vitamin B12 deficiency. Looking back, that's what we've have figured out. It's probably likely because I was having numbness and tingling in my feet. Now, of course, the baby might be on, you know, something in my nervous system and causing that. Well, they did nerve testing, and my nerve testing was fine. After I had my third child, I was still having the numbness in, especially the feet, sometimes my fingers and hands. And once I went off gluten, once I figured out I had C Lac disease, that went away. I had that for years. And looking back, we think it was probably the vitamin B12 because that can cause nerve damage and nerve issues if you're really low on that. And then folate and calcium are also in there because you just won't be absorbing as much calcium. I actually got diagnosed with osteopenia at age 37, very likely because I had been undiagnosed celiac for over 30 years. And so it had started, you know, my body was pulling the calcium and nutrients out of my bones because it couldn't get it in my digestive, you know, my digestive system. So, you know, these are some things you might want to be looking at. Talk with your doctor, what else should you be looking at for you in your particular body? And you can be still be strictly gluten-free and still sometimes feel awful because if these nutrient deficiencies aren't addressed, you're going to possibly feel bad. And if you're not eating properly and knowing how to eat, then you might be missing out on some of these um nutrients that you really, really need. So then another question you might want to ask is what symptoms should improve and which ones might linger and take longer. So typically for most people, if you have celiac and you have digestive symptoms with your celiac, not everybody does, that that is usually what often improves first. And it still might be spotty, it still might be very frustrating, you might feel great one day and the next day not. That's your body adjusting to you know all the newness that you're having in your body, and that you're actually able to start digesting your food properly, and that might throw your body into a little bit of a fit. Um, neurological skin and hormonal symptoms, those are gonna probably take longer. For me, I had terrible skin issues all my life until I went gluten-free because I finally figured out I had celiac, but I still have flare-ups. It could also be some other food that can cause some skin issues as well, on top of you know having celiac. And then the neurological can take some time. For me, that one was actually decently fast. I felt like I had started looking at the world in high definition again. Everything had seemed foggy before, and I didn't even realize it until I went off gluten. And then those hormonal symptoms, those could potentially take longer too. I've talked before on the podcast how I had such internal anger issues towards the end, right before I found out I was celiac, and I didn't know where they were coming from. And I'm not an angry person. If anybody knows me, it's pretty hard to get me mad. And if I do get mad, it's not good, but it takes a lot to get me mad. And I was just constantly like holding back all this anger inside and not wanting to bite people's head off and just like snap. Um, and that for me healed pretty quickly. So if you were experiencing a symptom like that that most people don't talk about, it could be quick or it could be a little slower. So just give yourself some patience there. And some symptoms I found faded gradually rather than like just disappearing. Like every year I'd feel a little bit a bit better on, you know, my gut tolerance for just food in general or um migraines, you know, just they could be fading gradually. So just be really patient with yourself. Another question I should have asked is what about cross contact and trace gluten? I had no idea when I first found out I had to be gluten-free that crumbs really do matter. They really, really do. That one little tiny crumb can wreak havoc on somebody with celiac or somebody very gluten intolerant. Restaurants exposures can still cause symptoms many times because it's easy for them to do that cross-contacts. We have to be very careful and very very diligent. Uh, one thing that we like to do in our family is we like to have take gluten digest pills before and after a meal if we're at a restaurant. And, you know, we might be pretty confident, but we just it's a good idea because they have a lot of gluten foods there too. We'll take those to help with the cross contact. It does seem to really help our symptoms a lot. And this, you know, knowing about cross contact and trace amounts can be often underemphasized in appointments. I would really recommend if you don't have a true gluten uh specialist that you go to a dietitian that's very well versed in this. Uh, that's one of the things that my current doctor had me do um when she started taking care of me and my celiac. And we went, I went to a nutritionist, and that was one of the first things the nutritionist said was, have you thrown away everything wooden? You know, I I actually kind of already knew that, but it was really refreshing to hear another um person in the medical field ask me these questions that I really should that should everybody should be asking for, because anything with potential cracks and crevices in it, like plastic cutting boards or wooden cutting boards or rolling pins or wooden spoons, all can hide trace amounts of gluten if they'd been used in your kitchen with gluten prior. So we just want to make sure that you are asking about cross contact and trace amounts of gluten and how to avoid them and how to improve your processes so you don't get sick. Now, one question I should have asked my doctor sooner is if I'm still symptomatic, what else could be going on? For me, I have actually many other food sensitivities and didn't realize that I was kind of blaming some cross contact. I wasn't kind of I actually was blaming cross contact issues at our local Chinese restaurant on what actually was a soy issue, and that soy gives me similar symptoms to gluten. And so once I figured that out, it was so much better. But like I thought I was getting gluten sometimes and having digestive issues and migraines because of it when it actually was soy. And one thing I did ask my doctor was was about my stomach issues too, at one point in time, and she recommended I go on the FODMAP diet. If you haven't ever heard of that, it's basically you're getting rid of fermentables and things that can really irritate your gut temporarily, and then you start putting back in. So you start with your favorite foods and put in one at a time to see what's the ones that bother you. For me, I found out apples bother me. Too many raw apples can bother me. So I just knew I have to limit my amount of raw apples. This also helped me figure out that uh corn and legumes also really give my stomach issues. They really make my stomach hurt a lot. So you could be having some other food sensitivity that you might need to get rid of. You know, I feel better when I minimize the amount of lectins. As of this recording this week, I've been eating a lot more lectins. And guess what? I don't feel as good. And I was thinking about that this morning when getting ready. I need to cut back on those again. So you want to make sure that you are understanding that if you're having persistent symptoms still, it could be something else in addition to celiac or gluten intolerance. So make sure to talk to your doctor. And if you need that FODMAP PDF, go ahead and join our Facebook group and send me a message, and I'll be able to share that link with you. It's not ours, it's not something I created, but I can point you to um where you can get that. It's a great PDF from uh Stanford. And to join a free Facebook group, just head on over to the glutenfreeengineer.com and you'll see a link at the top to get to our Facebook group. So then the last question is how often should I follow up? This is something I've actually asked our doctors recently, too, for some for you know some of our kids, the ones that are really, really bad with their symptoms. So, how often should you repeat your labs to make sure you aren't getting any gluten, make sure that your vitamin levels are correct? Um, how often should you check back in with a specialist versus your primary care doctor? So these are some really good questions on how often you should follow up and making sure you're asking your doctor that because it's going to vary person by person, how much you've been damaged, um, how well you're healing, things like that. So many people are often diagnosed and left like feeling like they're on their own. And following up help ensures healing is actually happening and you're actually getting better. So if you want more guidance on navigating these appointments, understanding results, and living living confidently gluten-free, head on over again to our Facebook group. That's at theglutenfreengineer.com. You can see that at the top. And you can also join our newsletter where we put tips in as well in there, and that's also linked at the top of our website. And then that question that changed everything for me was this if I'm doing everything right and I still don't feel well, what else should we explore? And I'm not sharing any of these questions to criticize doctors. We're all human, we all are in different places, we all have different understandings of different ailments. I share them because I didn't know I was allowed to ask them. And if I can help you walk into your next appointment more confident and informed, then this episode has done its job. 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 theglutenfreeengineer.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 medical advice. Always consult with a qualified healthcare professional for medical questions, concerns, or advice specific to your health.