Gluten Free Engineer - Making Gluten Free Easy

Why Your Celiac Test Came Back Negative - But you still feel sick

• Carrie Saunders • Episode 36

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So let’s talk about that dreaded negative test result. You walk into the doctor’s office with a list of symptoms, maybe even a family history of celiac. They run a blood test or maybe even a biopsy. The result comes back negative. The doctor says, “Good news, you don’t have celiac disease.”

But deep down, you know something isn’t right. You still feel terrible when you eat bread, pasta, or pizza. You might even think, “Am I imagining this?” Spoiler: you’re not. Here are five reasons why your test could be negative while you’re still struggling.


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Carrie Saunders:

Quick reminder before we get started on this episode. This podcast is based on my personal experiences and isn't medical advice. So let's talk about the dreaded negative test result. You walk into the doctor's office with a list of symptoms, maybe even a family history of celiac. They run a blood test or maybe even a biopsy. The result comes back negative and the doctor says good news, you don't have celiac disease. But deep down, you know something isn't right. You still feel terrible when you eat gluten with its bread, pasta or pizza, and you might even think am I imagining this? But you're likely not imagining this. We are going to be giving in this episode five reasons your test could be negative and why you're still struggling. So let's get to it.

Carrie Saunders:

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 podcast.

Carrie Saunders:

Today we're talking about what to do if you got a negative celiac test result but yet you still feel terrible, and some common reasons as to why you might still feel terrible and why you might have gotten a false negative, which could be the potential here. So one reason that you may have gotten a false negative and you're actually really celiac and don't know it is that you went gluten-free too early and blood tests only work if gluten's in your system, as well as biopsy tests only work if gluten's in your system. So these core tests only work if you've been eating gluten, for they recommend at least two to three months for an accurate test. The antibodies they measure when they're doing the blood test show up as a reaction to gluten. So if you've already cut back gluten or eliminated gluten before testing, your body may not have had enough of a reaction for the test to detect it. Doctors call this a gluten challenge, meaning you need to be eating gluten regularly for months before taking the test for results to be accurate, and some doctors will say several weeks. But honestly, in a lot of the research I've done, that may not be enough. And most of it says several months.

Carrie Saunders:

And this is where I went wrong. I accidentally went off gluten, trying to lose weight. If you know my origin story, I read the primal blueprint book and decided to use it to help me lose weight because it made sense from a scientific standpoint that if I controlled my blood sugars by eating less processed foods then I would be able to lose weight and going off of the gluten. Because I wasn't eating processed foods, because that's where most of the gluten is. I had been off of it for several months and I asked my doctor. I said, hey, I think I might have a celiac disease, can we do a test? And she's like sure. And back then that doctor I even asked her. I said, well, I haven't been eating gluten for a few months. Will this test still be accurate? Because I'd already read that it may not be accurate and she had no idea. So sometimes doctors don't even know. She's like, oh no, it'll be accurate. Well, it actually wasn't accurate. I find out a few years later. So make sure that you have been on gluten for many months before you get tested. And if you've already gone off gluten, then there's some other things that you can do instead. So talk to your doctor about that, because going back on gluten sometimes it's just not an option for us. I know they wanted to do that to our oldest kid who got marked for celiac Justin B Shore and we just knew that we couldn't do it because his primary doctor told him to go off gluten and he was feeling so much better and we didn't want to do that to him. We didn't want to make him miserable. And then reason number two is the wrong test was ordered. So I want to dig a little deeper here, because this is one of the most common reasons people get a negative test when something is still going on.

Carrie Saunders:

When most doctors say they're running a celiac test, what they usually mean is the tissue transglutamase antibody test. That is a mouthful IJA type, or it's also just the acronym, is TTG-IGA for short. It's the most common one because it's inexpensive and it's widely available and it's a very sensitive test for picking up celiac disease. But the problem is, if you have something called an IGA deficiency, which is more common than most people realize, this TTG-IgA test won't work for you. It could come back negative, even if you do have celiac disease. That's why doctors should also order a total serum IgA test at the same time. So basically, that checks whether your body even makes enough IGA for the main test to be valid, and a lot of family doctors and your primary doctors do not know this. This is not something they've necessarily been educated in. So most of the time when you want to be testing for celiac disease, I highly recommend that you ask for a referral to a gastroenterologist, somebody who specializes in this area of the body.

Carrie Saunders:

And then there are also two other tests that sometimes get skipped Endomysial Antibody IgA Test, or EMA-IGA for short. This one is extremely specific meaning. If it's positive, it almost always points to celiac. There are also two other tests that sometimes get skipped the endomysial antibody IgA test, or EMA-IGA. This one is extremely specific, meaning if it's positive, it almost always points to celiac. And then demyated Gladion, peptide antibodies or DGP tests. Some of these are really hard to read, both the IgA and IgG on these. These can be especially helpful in children under two or in people who don't produce enough IgA and IgG on these. These can be especially helpful in children under two or in people who don't produce enough IgA.

Carrie Saunders:

Now, obviously, these are the tests that are really common, thati was able to research and find on the internet. So I and ones that have been, you know, used on us as well, some, some of them have, some of them haven't. So I want to make sure that you are, you know, working with your doctor, as always, you know, because these tests may change, the availability of them might change, there may be new research that comes out and comes up with even better tests. So make sure you're doing current research when you are doing these. But I just want to make sure that our listeners recognize that there are more than one blood tests to be done to double check for celiac. Now, some of these aren't done because they're more expensive. Like I said, some of those on the earlier side that I was talking about are much cheaper and more readily available.

Carrie Saunders:

So work with your doctor to see which ones are appropriate for you, and if your doctor only ran the TTG-IGA test by itself, you may have not had the full picture. That one's definitely one to note, especially if they didn't do the total IGA with it, and in some cases, the EMA and the DGP need to be used as well, and without those it's very possible to get a negative result that doesn't reflect what's actually happening in your body. And then reason number three biopsies can sometimes miss it. Now, this is still considered the golden standard for celiac diagnosis, but sometimes the damage in your body is patchy, meaning some areas of the intestines are severely damaged while others look completely normal. And if the doctor samples a healthy spot, the test might look negative, even though you still have celiac. It's like checking a few tiles on the roof and missing the hole where the water is actually leaking in. So they generally say this one is definitely the golden standard, but there is a small chance that it could be a false negative here. So I just want to make sure that our listeners are aware of that and work with your doctor. If you get a negative result, but yet you still feel like you have celiac or something else going wrong, this is where I want to encourage you to advocate for yourself, like we like to do on this podcast.

Carrie Saunders:

And then number four is non-celiac gluten sensitivity. So for some people, the test is negative because they don't have celiac disease, but they still can't tolerate gluten. This is called non-celiac gluten sensitivity, or NCGS. These symptoms are still very, very real and they often overlap with celiac. You might have brain fog, you might have fatigue, you may have headaches, you likely have stomach issues, you're going to possibly have joint pain. But the big difference with non-celiac gluten sensitivity is it doesn't cause intestinal damage the way celiac does. So the good news is you're not likely getting malnourished from the gluten. So the good news is you're not likely getting malnourished from the gluten. But for day-to-day life, treatment looks the same. We are needing to avoid gluten so that you feel good. This is where we're listening to our body and eating the foods that make us feel good and avoiding the foods that don't make us feel good, and working with our doctor about the whole conversation here.

Carrie Saunders:

And then, finally, reason number five is it could be something else. It could be not celiac. It could be not celiac gluten, non-celiac gluten sensitivity. Sometimes it could be another condition that mimics it, and there are quite a few out there Hashimoto's, thyroid disease, crohn's disease, lactose intolerance and even food intolerances like soy or nightshades can cause digestive issues, fatigue and pain. I know for me I not only have celiac, but soy and specific nightshades cause me digestive issues, fatigue and pain. So I actually have a double whammy there and you potentially could have both as well, and that's why it's important to keep digging with your doctor and working through things, especially if the test is negative but your body is still crying out for help. This is something that I'm very blessed.

Carrie Saunders:

My current doctor is very good on being on top of new things, on top of finding a holistic answer to the situation, and she actually recommended a book to us recently called the Plant Paradox Book. I highly encourage you reading it. To read it, especially if you still have stomach issues, even if you know you're celiac and you're eating gluten-free or you're really sure you're gluten intolerant but you stick away. You know you stay away from all that gluten. There might be something else going on. For me, it's soy and tomatoes are my main culprits that I cannot eat. I can tolerate potatoes, thank goodness, which is in the nightshade family. I also can't tolerate peppers hardly at all, so I've been avoiding those as well.

Carrie Saunders:

So work with your doctor if you still don't feel good and sometimes misdiagnosis happen and then the one thing that some doctors will just say is that you have IBS, but it's simply a label, when your doctors don't have any other explanation, and I encourage you, if you've been labeled with having IBS, to get to the root of what food is actually irritating you. This is irritable bowel syndrome. Something is irritating you. It's not a oh, you're fine, you just have IBS. No, let's make your life a little better. Let's figure out what foods are irritating your insides and making you feel terrible. So certain things can really help.

Carrie Saunders:

Some things my doctor recommended to me was going on a FODMAP diet. It's a temporary diet where you take out basically fermentables. You can Google FODMAP and you should be able to find the list of foods to avoid and then you slowly add in each one to figure out what is actually bothering you. For me, raw apples bother me Some not terrible, but they make me, you know, my stomach really bloated and feel very uncomfortable, especially if I eat too many raw apples at once. So it could be simple things like that that you might just need to avoid.

Carrie Saunders:

And if you know what is irritating you, then you can make a conscious choice as to whether it is worth having that piece of food on that day, because you know what your day is the rest of the day, or what you expect it to be, or the next day. You know how this food is going to affect you and you know whether it's worth having a little cheat day or something on a food that you're not super tolerant to. Now I'm not talking celiac here. We do not want to have cheat days if you're celiac on anything gluten related, but if there's another additional food that's causing you digestive distress, maybe you want to have that slice of gluten-free pizza, even though the tomatoes bother you, like they do me. I just need to know that that's going to happen to me. So I usually don't make that exception, but there could be a time where that's what all I have is a choice for it. So it's nice to know what is actually bothering you. So things like the FODMAP diet can really help you figure it out. You can do the Plant Paradox and read that book by that doctor by Dr Gundry is his name. It's been a very interesting book for me to read this summer.

Carrie Saunders:

So work with your doctor. Even if they label it as IBS, have them help you do your own research and figure out what is bothering your stomach besides. You know, maybe besides gluten, let's say you have gluten problems too. What else is it? And so we want to be digging in to our own health. We want to be advocating for ourselves because it's worth it. We are worth having wonderful days where we feel great. If you've been navigating confusing symptoms or test results, you don't have to figure it all out by yourself. In my newsletter that we send every other week, I share gluten-free tips, safe product finds, recipes and encouragement to help you feel more confident in your gluten-free journey. You can sign up at theglutenfreeengineercom and never miss a resource that could make your life a little easier. So here's the step that finally gave me clarity.

Carrie Saunders:

After my negative blood test for celiac disease, I worked diligently to try to figure out what is wrong, and I knew from my research that the test might not have been accurate. So what I actually did is I went to my children's doctor their pediatrician and told them how sensitive I was to gluten and how it affected me and how it was so easy for me to get sick. And I asked him I'm like from what I read, you know this is a hereditary disease. Should we be testing the children? And he said yes. At the time, my primary care physician was not one that knew. I had a different one then than I do now. It's not one that knew much about celiac, but my pediatrician knew a lot more about celiac and he said yes, we need to test all the children. Well, the oldest immediately got a positive blood test result after testing for it a positive blood test result after testing for it, and that helped me give that clear answer that well, he's got it. So I probably got a false negative.

Carrie Saunders:

We then went to a gastroenterologist a few months later who confirmed that I had it based upon my symptoms. Now, typically a doctor won't confirm it based upon your symptoms, but I'd already been off gluten for a whole year and there's no way I could have functioned by going on a gluten challenge and going back on gluten to get a medical test based upon my children and based upon my symptoms. He enabled me as positive for celiac. Later come to find out after my dad passed, he actually had a positive blood test, positive test I'm not sure which test he got for celiac disease and had been hiding it for over 10 years. So that just further, you know, shows that I actually do have it and then that that gastroenterologist was correct, because I actually told both my parents when I was told I had celiac disease that they needed to be tested and apparently maybe my dad listened, but then he didn't want to tell anybody else that he had celiac.

Carrie Saunders:

So the moral of the story here is that you know you know your body best. Work to get the answers you need. You're not paranoid, you're not making things up. When we feel terrible, we feel terrible and it's worth it to figure out what is wrong. So I encourage you to work to figure out. If you're still having issues, figure out what is wrong, see a different doctor, do your own research, come with better questions instead. If that helps your doctor do a better job of understanding what you're trying to say. You want to encourage you to trust your body because it's telling you the truth.

Carrie Saunders:

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 theglutenfreeengineercom. 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.

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