Celiac Awareness Roundtable: Living Gloriously Gluten Free - S2 E20

Alysia Thomas:  Welcome back to Autoimmune Adventures. Today is really a personal one for us. All three of your hosts here, myself along with my sisters Stacy and Becky. We all have celiac disease and it runs deep in our family. And since we all live with it, we thought it would be good to just sit down and have a conversation, the three of us, for what it's like to live with celiac disease. Um, so instead of interviewing a guest today, that's what we're going to be doing. We're kind of interviewing each other and we want to share what celiac is really like, what it is, what it isn't, and what it's like to live with it every single day. And some of the things that we wish we had known sooner.  

Stacy Griffin:  So, let's start at the top. Celiac disease is not a food allergy and it's not a food intolerance. It's an autoimmune condition. And that means that when someone with celiac eats gluten, whether it's protein in wheat, barley, or rye, the body doesn't just get an upset stomach. The immune system actually attacks the lining of the small intestine.

It can cause real damage over time. It can flatten the villi, which are tiny little finger-like structures that absorb nutrients in your intestinal tract. Think of it like a shag rug. So, you've got all these little villi inside of you. And what happens when you eat gluten and you have celiac disease is that the gluten destroys the villi. It's like shaving them off. So now your body doesn't have the ability to absorb nutrients as well. And that's why it affects the entire body, not just your digestion. Because if you can't absorb nutrients, your body can't operate the way that it's supposed to. And that's exactly why celiac gets called the great mimicker. The symptoms can look like so many other things that you could possibly have going on in your body.

Becky Miller:  Yeah. And the symptoms really can be all over the place. Some people get, some of the most common ones are the GI um symptoms like pain and bloating and diarrhea, constipation. One of the ones I got before I was diagnosed, it was like my intestines would gurgle, you know? It wasn't like I was even tooting or whatever. It was just like I would get these horrible gurgling, like my stomach and intestines were just talking out loud. So, GI um, issues are pretty common, but it can also show up in things like skin issues. Some people get rashes, and some people even get things that you would maybe not consider as something that you would get from eating food, which includes fatigue and brain fog, which is so real, and joint pain and even migraines. And because it can look so much like so many other conditions because there's so many different ways that it impacts people's bodies and everybody's different. Uh, people go years often without being diagnosed. And unfortunately the longer you go without being diagnosed, the more damage that can cause to your intestines, nutrient deficiencies, which can actually cause things like hair loss, osteoporosis, infertility is a very real thing, and even increased cancer risks. So, um, if you have any of these things going on and you've narrowed it down and you're not, you know, the normal suspects aren't there, you might want to consider being tested for celiac disease. It's very easy. Uh, they have a very easy test for it now.

Stacy Griffin:  I need to quickly mention that for me, I had been having some gastrointestinal distress, but what ended up happening is I started having really weird um, heart palpitations after I would eat gluten. So, I'd eat a slice of bread, or I would eat some pizza and I'd feel fine at first and then my heart would freak out. So, I went to a cardiologist and they couldn't find anything wrong with my heart. My heart looked totally fine. There was nothing wrong with it. So, he said, "I don't know what to tell you. You just..." But you know what, guys? I went gluten-free after getting my celiac diagnosis and the heart problems went away. So, I know there was a correlation there, strange as it may be, but if you think about it, if your body isn't receiving the nutrients that it needs, it's going to cause problems in your major systems like your heart, your liver, your lungs, your kidneys, those kind of things.  

Alysia Thomas:  And it is important to look at other symptoms that are not your typical ones you would expect for celiac disease. Mine were not. I didn't have anything going on GI wise. I had just debilitating fatigue, brain fog, and I would have joint pain that was bad enough that I was like, "Oh crap, I think I have rheumatoid arthritis." I was into a rheumatologist because I was pretty sure I had rheumatoid arthritis because that's how bad my joints hurt. Uh, the only reason I got tested for celiac was because Stacy had just been diagnosed and she had said, "I didn't really have regular symptoms, but I got the diagnosis. Maybe you should get checked, too." My doctor was very hesitant to order it for me, even though my dad had had it. Um, my sister, both my sisters had been diagnosed, and I'm like, he went ahead and ordered it. And to his credit, at least he was able to do that for me. But I was pregnant with Lucy at the time, my youngest at the at the time. And so we'll talk about the diagnostic um, process here next, and I'll, I'll go into that a little bit more. But when you, as Becky said, there's a blood test that can be done, and it's not always as straightforward as you would like it to be. The blood tests are not perfect. There are false positives and there are false negatives. um it's a small percentage of them but they are there and they do happen.

Alysia Thomas:  So the gold standard for diagnosis is to have an endoscopy. Um and they would put you out that if you don't know what that is, they'll put you out and they will put a a little camera scope down your mouth down through your stomach into your intestines and they will take biopsies and they will check the health of your villi the little fingery things Stacy was mentioning. And um what's the kicker about the endoscopy is that you have to be eating gluten at the time of the endoscopy be, for the results to be accurate. And that can be kind of brutal.  

I mean for me I was pregnant and so they wouldn't do an endoscopy on me. Um they said you your blood test is very much positive. go gluten-free and um then once the baby's born, we'll need you to start eating gluten again and have the endoscopy. Let's just say I never had the endoscopy, because I will be damned if I ever purposely eat gluten again. Um I tried going gluten-free for a while, and I think I'd been strictly gluten-free for three weeks and I had a piece of pizza, and I learned my lesson. I learned my lesson and that was a good enough diagnosis for me. I didn't need a biopsy. Um, but that is the typical way that you would get diagnosed is through that endoscopy. Um, and I have a girlfriend that that just happened to that just happened to, and she had gone gluten-free. She'd been gluten-free for a few weeks. She was starting to the brain fog was starting to lift. She was starting to get some more energy and she was just feeling better, and then they told her she needed to eat gluten again.  So, it was really hard for her, um, but it did confirm her diagnosis.

Becky Miller:  Yeah.

Alysia Thomas:  It can make you sick. Just be prepared for that. Probably plan on it actually. It's a tough step but for a really accurate diagnosis that is the gold standard.

Becky Miller:  Yeah. And even though it's not fun, it really is, it's so much nicer than it used to be. Um when I was diagnosed, they did not yet have the blood test. And um I, I had both the endoscopy, but they also did the thing where they made me swallow a little teeny camera, and ,and I remember them telling me that the the equipment I had to wear to scan the camera through my body, they're like, "Oh, you can go to work. It's it's going to be like so simple and it's not a big deal and it's very, you know, it's it's very... not easy to see."

In a nutshell, it was like having a third square boob and with flashing lights that made you look like you were like ready to blow up like a bomb. But, uh, yes.

Alysia Thomas:  Amazing. An Iron Man kind of situation but square.

Becky Miller:  But point being, yeah, and it was still new enough. They were even even when they saw that I had some damage in my intestines, they were hesitant to diagnose me. And so, this is again where sometimes you have to advocate for yourself. I didn't have really super severe damage. I did have damage, but kind of like Alysia said, I said, "Hey, I know my dad had this. Can Can we just try going on a gluten-free diet and see how it goes?" And I, I think my GI doctor was almost as surprised as I was um that that was the case. But like I said, I had, I didn't feel like I had to have my intestines completely ruined to be able to say, "Hey, there's a little bit of damage there. It's the beginning. I know what the family history is." So, don't be afraid to speak up to yourself for yourself when you're in that diagnostic process.

Stacy Griffin:  Alright. So, Becky just mentioned our dad. Our dad had celiac disease. And with that in mind, let's talk about family for a second because it really hits home. If you have a first degree relative with celiac, you should get tested.

Alysia Thomas:  Period.

Stacy Griffin:  And it, it's just it's a given. It's a given. And we'll talk about why here in a second. But for us, it has been very much a family affair. Our dad and even our great grandpa both had it. And now all three of us have it. And Alysia of her five children, three of them have it. So it is a very strong genetic marker. So the genetic markers are HLA DQ2 and HLA DQ8.  

Stacy Griffin:  All you need to know is that these markers allow you to receive a diagnosis through a blood test. And that's hugely beneficial, especially for instance, in the case of what Alysia went through. You cannot go and get an endoscopy when you are in the middle of a pregnancy. However, the blood test gave her the information she needed to hopefully help her body feel a little bit better during that last part of her pregnancy. It wasn't going to solve all the problems, but at least it was one thing in the midst of all the other stuff that she could actually deal with. Um, having these markers doesn't necessarily mean that you have active celiac disease, but it means you are very strongly prone to developing it. So, you can't have celiac without one of these markers. That's what you need to know. So, getting the test can help you to get information and getting the test will help you know if your celiac is active.

Alysia Thomas:  So, just to add in here, if you do have a first-degree relative with celiac disease and you choose to be tested for it, um when you go to get tested, ask them to do the genetic testing as well. Because they will testing for antibodies and if your antibodies are raised, that's an indicator that you have the disease. If your antibodies are not raised, but you have those one of those genetic markers, as Stacy just explained, that's your indication that I might not have it now, but I could develop it at another point in my life.

So, my youngest just got diagnosed earlier this year and she had been tested two or three times before and always been negative. Um, but I had them run the genetic markers test as well. She came back positive genetic markers and positive for celiac at the same time. So, you can come back with a positive genetic marker test, and not have celiac disease. That's what we we want to help you understand that if you're getting tested, just ask for the genetic marker test as well, because if you know that you have that, you, it's just it's just a little insurance policy. It's just a little okay, I have that genetic marker that means at some point I could develop this. Um and if you don't have it, you don't have to worry about it, which would be lovely. Um that's not to say that you can't have an intolerance to gluten. If you um don't have those genetic markers, you could still have an intolerance, and not have celiac disease. So, a little tricky, but good information to move forward with.

Stacy Griffin:  And I'm going to pop in here really quick and say something that I think is really important. We know that most of our audience, the people out there who are listening to us, you already have an autoimmune disease. So, I need to put in a plug for how autoimmune diseases like to cluster. If you have a genetic predisposition to celiac disease, and you already have another autoimmune disease, please seriously consider going gluten-free.

Alysia Thomas:  Yes.

Stacy Griffin:  Just please. Once you get the test, and you know you have the genetic predisposition, please spare yourself the pain, the damage to your body, If, if there's anything that I wish I could go back and do, I wish it was that I had went back and advocated for myself sooner. I had known something was wrong for probably five years. Five years I knew something was off. Something was just not right. And instead of fighting for my health, I just trusted whatever I was told by whoever's office I happened to be in. I'm not even going to blame my doctors because I did not fit the normal celiac model, okay? And I know that. But if I had if I had been more um, vigilant in my own health and my own care, I would have figured it out before I did. it wouldn't have gotten as bad as it did. So, I'm a big advocate for pre, preemptive work. Okay?

Alysia Thomas:  So, there to to that point, after my diagnosis I like deep dived into um, because I had I had my celiac diagnosis and then it took me I I went gluten-free and I did feel initially a little bit better, but I wasn't great. I went back, and back, and back, and I think I saw five different doctors before I found my Hashimoto's diagnosis. And so, as they as Stacy said, they like to cluster. Hashimoto's and celiac are especially, they're little like besties. We don't like that, but that's the case for a lot of people. So, even if you have Hashimoto's and you haven't tested positive for celiac disease, if you do your research, you're going to find that almost anybody who is teaching um, anybody who is teaching how to live with autoimmune disease is going to tell you gluten is not your friend, no matter what your autoimmune disease is, unfortunately. Doesn't mean that you're going to have the same reaction that a celiac person would, but gluten is just it's just not our friends, unfortunately.

Um, but flashback - I mean with Stacy's story, flashback to when our dad was diagnosed. Probably what, like 30 years ago, guys. I don't I mean, nobody knew what it was back then. It was so, so uncommon. Um, and it wasn't that it didn't exist. It was that people did not know what it was. They didn't know how to find it. He was... my mom had to advocate for him. He was skin and bones. We thought he was going to starve to death. We didn't know why. He was on an extremely healthy diet, because he had heart problems, and type 1 diabetes, and high blood pressure. So, he was eating a very healthy diet and he was taking in zero nutrition. All of the food that he ate went right through him and no nutrients were being absorbed.

My mom took him - we lived in a small town kind of in the middle of nowhere, and she drove him - three hours north to a bigger place with a big hospital and she took him into the ER and she said, "I am not leaving here until you tell me what is wrong with my husband, because he is going to starve to death and nobody will tell us why." And I think he was there for three days or something before they did that test, um, and figured that out. And when they did go in and and do the endoscopy on him, his vi, villi were almost non-existent. They said he'd probably been living with celiac disease for decades, and it was, I mean he was so nutrient deficient that didn't matter what he put in his body. It it didn't matter how healthy his diet was.

So that is something to keep in mind. Everybody's symptoms are going to manifest differently, and you need to be aware of that. You really, really need to be aware of that. And you need to be aware as Stacy said also that when you're not taking in, when you can't absorb nutrients, that's going to affect your whole body. That's it's not just a gut thing. It's not just a stomach thing. You need nutrients from your food to be absorbed and used. And when you can't do that, your body starts shutting down.

Becky Miller:  The other important thing to remember is once you're diagnosed, the only treatment is a strict lifelong gluten-free diet. And guys, we really mean strict. It might not be fun, but there's not just a little, or "I'm taking a cheat day," because every little amount can actually cause damage. And once you start eating gluten-free, it can take months for your villi to repair and for your intestine to repair. And unfortunately, like one gluten, like one gluten contamination can actually mess you up again for up to, they've done studies that show that sometimes it's up to four months later.

So, you don't want to have cheat days. You don't want to do that to your body. Label reading again is not fun. Um, as Alysia likes to say, "I might not like it, but I have to do it." Um, it's very important because gluten hides in all kinds of things, sauces, soups, seasonings, uh, even vitamins and medications. It doesn't always show up also in ingredient lists. In fact, most of the time it doesn't show up as "gluten" and a lot of times it doesn't even show up as "wheat," uh, or "barley." Sometimes it's listed as things like "modified food starch."

Um, cross-contamination is a really huge deal. And I know for all of us, we've developed kind of little systems at home.  We've each developed systems at home. We have things like separate toasters. Um, I know for me, we do separate condiments because I'm, in my house, I'm the only one that's uh got celiac that has to eat gluten-free. And so um, some people choose to make their whole house gluten-free. I'm the one who does most of the cooking. So I'm just super, hyper-vigilant about keeping everything clean. Um, because I hate to say it, but anybody who's had to go gluten-free, things like gluten-free flour, um if you're buying already made gluten-free bread or whatever, sometimes it can get pricey.

The basics of gluten-free, like veggies and meats and things that are safe, usually aren't too bad on your budget if you're shopping wisely. But if you're getting any of the specialty stuff, it it gets kind of pricey. So for us, we just separate everything. So, I actually have a section of our refrigerator that is the gluten-free section, and I have my own butter. I have my own mayonnaise. Um, and things that are like squeezable, where most people would think that was okay. It's okay at our house, because we have a rule. We call it "air-dropping." Um, because some people will like put the tips of things on their bread when they're putting it on, or whatever. And everybody at our home knows that if you're squeezing out anything that somebody else is going to use, it's got to be above everything, so you're not getting crumbs on it.

And some of these, some people would be like, "Well, what's the big deal?" Like, you know, sharing butter, what's the big deal? You're getting crumbs in it. And it can actually really trigger your celiac in ways that you didn't realize. We have a gluten-free pizza pan, and we have a regular pizza pan. Uh, cutting boards, serving utensils, all the things you need to have them separated. And even things that a lot of times people don't think of like unintentionally. If you're at a family dinner, separate things enough that you don't have people like bringing their plate that's got rolls and other glutenous things over the top of all the gluten-free food.

Or one, one of the ones that happened to me recently at a dinner um that was not my immediate family - because my immediate family is super good about, you know, handling that - but it was it was an extended family dinner I went to, and somebody put out some homemade jam, and I was like, "Sweet. That's going to be awesome." And literally the person that was right in front of me in line, not even thinking about it, took their roll and just dipped it in the jam instead of like using a spoon to scoop it out.

And so know that this is again not fun, but this is where you have to advocate for yourself, because it you might feel like you're the squeaky wheel and maybe it's inconvenient, but you need to speak up because your health is important, and if people really love you and care about you, they want you to feel good. They don't want you to be sick. They don't want to have those problems.

Alysia Thomas:  Keeping that in mind, cross-contamination being an issue, you really have to be mindful of that when you are dining out, when you're traveling, when you are uh, attending a social event, a family gathering, things like that you have to learn to advocate for yourself. And that means you've got to ask questions. And um when you're dining out, you, you need to ask if you're getting something fried, is there a dedicated fryer?  Do they have a place a designated um, prep area for gluten-free foods? Do they, you know, clean their grill between, like wipe things down, um change their gloves, things like this?

Alysia Thomas:  And it's it's hard to do in the beginning. It was for me, hard to advocate for myself in those ways. Now I know very safe places that I can eat and I know places I will never go back to. Um, if you ask if they have a lot of places now have a gluten-free menu. Um, and they will specify um on a regular menu sometimes if it's "gluten friendly." And be very wary of those if you have celiac disease because gluten friendly is not the same as gluten-free. Um, you're going to have to do your due diligence. I don't typically go out to eat without doing homework beforehand. Um, knowing where I'm going, knowing what is on the menu. Sometimes I will call ahead and ask questions. And unfortunately, you're going to have to send food back sometimes. 

I've had, been places where they bring a plate out that has a roll sitting on it or they have croutons on my salad, and I have to explain why I can't eat that food. Um, most it, it's getting better and better and better. It really, really is. And we are very blessed to live in a day and age where it is not as difficult as it was for our dad. He just never could eat out. He never could do that once he went gluten-free years ago. So, traveling, you want to make sure you're packing safe snacks. Um, there are not a lot of airport places where you can find gluten-free snacks. Um, obviously there's always going to be fruits and vegetables, things that are like like that that are going to be safe, but you've got to be intentional. You've got to think about it. You've got to be willing to um, prepare yourself. You've got to be willing to speak up and you've got to be okay possibly ruffling feathers, which I hate.  

Alysia Thomas: Like I said, less and less happening these days, but there are times when it's going to be uncomfortable for other people at your table, maybe when you have to say that you can't eat that and they you have to sit and wait for your meal to be remade while everybody's eating. That's happened to me several times actually, and it's uncomfortable and it's unfortunate. Um, but... and nothing I always say nothing tastes as good. Nothing tastes so good that it is worth how I feel if I get sick from gluten. Nothing. And that's saying something, because I remember what my mom's homemade rolls tasted like and they were heaven on earth. But you couldn't like there's nothing you could say or do or offer me that would entice me to purposely ingest gluten into my body at this point. It truly has made the switch in my brain to "this is poison for my body." And we you'll also need to be prepared with answering the questions because people are going to ask questions, and it's usually going to be over the dinner table. People that don't know about celiac disease and just be prepared to say, "You know what, I just it's not polite dinner conversation to tell you what happens when I eat gluten. Let's just say I don't want to do it." So...

Stacy Griffin: I don't know, Alysia. I think the thing that you said about, "I want a little bit of gluten like you want a little bit of food poisoning" is probably the most succinct way of dealing with it. Anyone who's ever had food poisoning knows the effect, the diarrhea, the gut issues, the vomiting, all of that. All of that is possible when you are given gluten and you have celiac disease. But instead of getting into all the gross nastiness, saying that one simple thing nips it in the bud.

Because celiac can damage the absorption that our body has, a lot of us can deal with deficiencies like iron, vitamin D. Our B vitamins are generally low. We have a real struggle with absorbing calcium the way that we need to. And supplements can help, but it's also about giving your gut time to heal. Because as your gut heals, your body will remember how to absorb things.

Stacy Griffin:  Our bodies are miraculous at healing themselves when we take away the poison. So, some feel people feel better pretty quickly. Um, a lot of my heart problems went away almost within like days of stopping gluten, but the gastrointestinal problems took a lot longer to fix themselves, to wire themselves back out. It could take months. It could take years. It took my body about two, two and a half years before it felt like eating food was not a Russian roulette experience. And I felt my body was finally beginning to catch up with itself again after about two years. So it takes a little while but after that it it can get significantly better. I had been sick for a long time. A long long time.

Alysia Thomas:  Yeah. And that right there is why we take cross-contamination so seriously because yes, a few crumbs can set you back for months actually depending on how sensitive you are. So, it's it's just something that you you'll have to figure out for yourself how sensitive you are, and you and it's not a fun process, but you will learn. You will accidentally ingest glute, and you have to kind of learn for yourself. So...

Becky Miller:  Okay. So, let's take a moment to talk about the mental side of this diagnosis, too, because it is honestly really huge, because the food anxiety can become really real. You go out with friends or, you know, holiday events, whatever it is, and you're wondering, is this safe? Did they use a clean pan? Am I going to get sick later? I know one of the ones that I had to deal with, and I didn't have it happen too often, but occasionally, you'll maybe go to a social event where people bring prepared food. And I just learned to start bringing stuff myself, because sometimes you'll go to things like this and even people that know you have celiac disease, you can go somewhere and they will literally have nothing. I mean, a standing joke with my family when we go to like bigger events that include a lot of people is, well, "you can drink the lemonade," you know, like that's sometimes that's all there is. And and you have to like not be offended or take that personally, you know, even like for instance, even the extended family one where, you know, the the roll got dipped in the jam. I was just like, you know what, this is family that doesn't see me very often and every one of them is like very healthy. So, this is like I can't get all, you know, up in my feelings about that. They're doing the best that they can. So, just recognize that you're going to need to give yourself time to get used to some of those feelings and don't get so anxious on the food anxiety side of things that you don't allow yourself to do more.  

Becky Miller:  Like, there are so many good gluten-free places. Like Alysia said, just do your research. And if you're not comfortable going out, just eat at home. But that, if you like the experience of going out, just do your research, and don't let yourself feel anxious all the time.

Alysia Thomas:  And a quick plug. If you do go out to eat and you get really good service and you have a safe meal and it is and you you feel like you've been taken care of, leave a good tip. Leave reviews on Google, on their, on the restaurant's website, wherever you can because those are the things that I personally depend on those reviews when I'm looking at places. I want to see somebody with celiac disease ate there safely. You know, I want to make sure that the servers there take it seriously, and I want to make sure that if I've been given good service, I'm going to leave a good tip. I express verbal appreciation for the service. I express verbal appreciation for the cook. 

Alysia Thomas: And um I have had owners come out and talk to me. I have had chefs come out and talk to me before. Um, if those those places that go above and beyond, I will come back. I will patronize their business all day long if they take care of me. So, and they're interested in our feedback. A lot of these places are interested. Maybe not Burger King or, you know, places like that. I've given up that I, I whatever. I'll never safely eat there, and I couldn't care less, honestly. But places um local places, um places that are little mom and pop shops, places like that that are trying to cater to those with dietary issues, make it worth their while. It's not, it's expensive for them to do this for us. It's not cheap. And so when they go out of their way to have a gluten-free crust or a gluten-free bun, even if it's not the best, if it is edible and you enjoyed it and you provide, you provided good service and it was safe, show some gratitude, because we can't, I mean, as Becky said, you can't go to social events and expect there to be something that you can eat. You just can't.

Stacy Griffin:  All right, so let's all take a minute and share what we wish we had known about Celiac and the concerns involved in it. Beck, why don't you go first?

Becky Miller:  So, I wish somebody had told me just how sneaky gluten is. Um, how much you're going to have to be reading labels, whether it's, you know, wheat in soy sauce. There's a lot of candies that you would think... I remember one time finding ice cream, and it wasn't like ice cream that had cookies in it. It was plain vanilla ice cream, but it was a certain brand of it that had flour in it, wheat flour, that you would just not expect.  

Um, even some beauty products, like honestly, it's not uncommon for lipstick to have gluten or shampoo. And those are things that you need to look out for.

Stacy Griffin:  What about you, Alysia?

Alysia Thomas:  Um, for me, I would say I wish I had known, I wish somebody had discussed with me, um that when you go gluten-free, you are going to be so much better off to just navigate toward whole foods. Don't go buy all of the gluten-free, the crackers, the bread, the pasta, the packaged cookies, all the packaged stuff is not healthier. It's not. Just because it's gluten-free doesn't mean it's healthier. It won't damage your body the way gluten will, but it is still processed food with preservatives, less, not nutrient-dense, you know. And I did not I really, man, I swear I lived off of like Fritos and Skittles for my first month of this. It was terrible. And I developed a pretty healthy sugar addiction when I went gluten-free because I was like, well, what can I eat? I can eat ice cream. Not all ice cream, but I can eat ice cream. So, I ate ice cream. I can eat, you know, there's a good number of cereals that are gluten-free. They're all processed junk food. You know, candies and, you know, I can eat Rice Krispie treats. Not regular Rice Krispies, though, guys. They're made out of rice. You wouldn't think they'd have gluten in them, but guess what? They do. So, don't eat regular Rice Krispies. You got to find the off-brands that don't have uh, barley, malt barley in them. So, that would be what I wish I had known. I wish somebody had said that um when you go gluten-free, you're going to be better off leaning toward, into into whole foods, real foods, and that is where because you need those. You need those because you need to replenish your body with nutrients.

There's not a lot of nutrients in processed food. That being said, don't feel bad. Don't feel bad about using, you know, I don't want to make anybody feel bad about using gluten free substitutes, especially when you are transitioning.  

Becky Miller:  No, because sometimes we really are just dying for a gluten-free Oreo. Well, maybe you're dying for an Oreo, and gluten-free is the only option you have now.

Alysia Thomas:  Right. Right. Like it is it's absolutely okay to allow yourself a treat. Um, I just, I don't have I don't have those products just in my pantry anymore because they are. they're not giving me much. They're treats. They're special treats. And as Becky said, they are expensive. So, keep that in mind when you're budgeting. Keep that in mind when you're when you're planning your your menu and you're looking at what what in your diet is going to provide you the nutrients you need. Tortilla chips are made of corn, but I'm telling you, they're not good for you, and I love 'em. So, I'm I'm not I don't want to shame gluten-free products, but I'm saying be careful because I wasn't. And it got me hooked on sugar and junk food.

Stacy Griffin:  If we had known that whole foods are, 95% of them are gluten-free, okay? Meat is gluten-free until you bread it. Vegetables are gluten-free. Fruit is gluten free. Rice, potatoes, are gluten-free. Quinoa is gluten-free. You know, I think people make it so much more complicated than it needs to be. So, that's one of the two things I wish I had known is that it is not as complicated, nor does it have to be as expensive as people lead you to believe. And second, and this is a huge one for me, I wish I'd known that it was okay to say no to people. I don't have to justify or apologize for protecting my own health. Now, I have a I am a very strong advocate for myself and others now, but when I was first learning all the different things that were wrong with me, I, I felt this shame, this hatred of my body and its inability to just do things like normal people. And now I realize that genetically I can't change that. So, if I can't change that, what can I change?  

Stacy Griffin: And I look at my circles of influence and I think, what am I capable of making a difference in? What can I change? Well, I can certainly change the way that I allow people to treat me. I can certainly change the way that I choose to look at myself. So, now I look at myself from a standpoint of this is not something I can control, but what I can control is how I handle it. So, I'm a huge advocate, not just for myself and not just for my sisters, but for anyone who's going through this. And you need to learn that it is okay to say no. No, I don't want the macaroni and cheese. Thank you for the offer, but it won't, it, it, it's not good for me. Usually, usually what I have also learned is that if you say, "no, thank you" politely, most people don't push. The people who push are where you get to say no a little more actively with I don't want gluten. Like I don't want food poisoning. But usually most people if you just say, "No thank you. I really appreciate the offer but no thank you." That's all they need to hear. So I had to learn that saying no actually was my biggest protection.

Becky Miller:  And I was going to say I would actually say that's maybe a positive. So kind of along those lines, let's talk for just a second as we're rounding things out about the positives about being diagnosed. I know for me, kind of like we were talking about whole foods. I feel like I eat healthier now than I did before my diagnosis. I was huge carb loader. Loved me some bread, especially homemade bread. So good. Um, I have learned to cook more healthy and I am more, definitely more intentional about what goes into my body.

Alysia Thomas: For sure. I would say for me, one of the the positive that I think of most often is my people. I have my people. I have found community and they and they're not necessarily all in the same place, but um every place that I have lived since I had my diagnosis, I have found my little pod of gluten-free buddies. Um, and I try to be that gluten-free buddy to people.

I have a daughter and two good friends who have all been diagnosed with celiac just this year. And I, I love to bring them a care package with my favorite products, just a few of them, cuz they are expensive some of them. Um, and I, I typically I have a print out of restaurants they can eat at. Um, brands that I like for for certain products, um, all kinds of like vitamins that they should consider uh, talking to their doctor about. um things like this that they maybe didn't get because a doctor can't give you in the short period of time that you're spending with them, they can't give you the full rundown. And having somebody else who knows what you're going through uh is really really helpful. So I, I share recipes. I, I like to bring food to people um if I know that they have just been diagnosed, I will make them something delicious and I will bring it to them and I'll say, "Look, you can still eat good food."  You. There's like...

And, and I, I hold by this like I don't cook or bake anything that doesn't taste good. Period. I don't eat things that don't taste good. I don't. I don't have to. There is so much good food available to us. And these people that are newly diagnosed maybe don't know that. So, I bonded with one of my very dearest friends to this day. She's one of my dear, very dearest friends, but we bonded over gluten-free rolls that we were having at a dinner with common friends. And um it's, it's just having people that understand. Having people that understand that can we can swap recipes. We can talk about products. We can tell where we found stuff. "Oh my gosh, I found this at Trader Joe's or I found this at Whole Foods or I found this on Amazon," whatever. And I have that with my sisters, which is amazing. Amazing. We have a pretty impressive recipe um, collection between the three of us.  

I don't feel deprived of anything except licorice. Dang it, red licorice. I want some red licorice. But uh other than that, I don't feel deprived. So, I would say the best part for me is has been the community, the support system.

Stacy Griffin:  I would say that for me it's been finding a way to truly be an advocate. And I know that that was the thing that was the hard part for me was learning to say no. But as often the case in life, it's that two-edged sword. Okay. So if we're looking at things here, my most positive thing that I've learned from this adventure that we are going on with autoimmunity, and specifically with celiac, is that I can be an advocate, a strong advocate for myself. I can stand up for myself. I can protect myself. And that advocacy is something that I share with everyone I meet who struggles to protect themselves. Because it's hard when you first start. So that is what I've learned. That's what's made me stronger is the advocacy element of this. And we have to be advocates for ourselves.

We have such a heart for advocacy that we are actually in the process of putting together a course that we are going to be launching the beginning of next year about advocacy and how to advocate for yourself with doctors, with your family, with your friends in ways that are not going to offend anyone, but are going to still get you what you need. So advocacy is vital, and that for me has been my biggest strength through this experience.

Becky Miller:  Yeah. And guys, we mentioned before that there is currently no cure for celiac disease. The way it's treated is by eating a very strictly gluten-free diet. However, scientists are working on new treatments, things like enzymes to break down gluten, medications to protect, uh protect us against accidental exposure, and possible possibly even vaccines.  But nothing, it's all testing and everything, nothing's available yet. But it does give us hope that in the future it might be a little easier for people with celiac disease.

In the meantime, if you find that you think you might be cross-contaminated or you know you are, um, we have found it doesn't cure all and it can't prevent all the damage. But drinking coconut water, um, taking activated charcoal, you can usually get it in little pill capsules and digestive enzymes. Those can actually be helpful. Um, like I said, it doesn't always stop the damage to the intestines, but it certainly makes the stomach and intestinal issues not as bad. So, there are options to help you out if you have been cross-contaminated.

And so, guys, this isn't medical advice. These are just tips, things that we've had help us. Um, definitely with the activated charcoal, um, you're going to want to run that by your doctor because it does have an absorption that sometimes it can absorb medications that you might be on, so your medications aren't working as well. So, don't take that one lightly and don't take it without a doctor's care. Um, coconut water is a super easy one. It's one that I, I literally just grab it at the grocery store. I keep a couple in my fridge. Um, and if I think I might have been cross-contaminated, that is the first thing I grab. So, those are just helpful options.

Alysia Thomas: So, we're going to wrap up. We want to thank you for joining us. This was our little celiac roundtable and what we have discovered um, that we wanted to share with you, what living gluten-free really means to us and how that affects our lives in in so many different ways. If you have celiac or if you love somebody who has celiac or you're supporting them, um we hope that this sheds a little bit of light on the challenges and the realities of it. And we, we want you to remember to not let anybody minimize what you are dealing with. You are your own best advocate. Um, some people might not believe that celiac is real. There are people out there that still believe that. Um you don't have to waste your breath on them, okay? So, just keep advocating for yourself. Thank you for joining us. We hope that this was helpful to you.

Remember that you are worthy of joy. Your disease does not define your life. You do.