#643 That Damn Cupcake

Jen is here to talk about celiac.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

---

DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 643 of the Juicebox Podcast.

Today, I'll be speaking with Jen, she is the mother of a child with type one diabetes. That child also has celiac disease. A few weeks ago, Jen heard me on another show. And she didn't quite agree with what I was saying about celiac. And she reached out to try to help me understand better. When she did, I invited her to be on the program. And here she is today. I hope you'll enjoy the conversation as much as I did. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you're enjoying the Juicebox Podcast, please share it with someone else you think might also enjoy it. If you have type one diabetes, where you're their caregiver of someone with type one diabetes, and you're a US citizen, it would take you less than 10 minutes to join the T one D exchange registry, fill out the survey and help people with type one diabetes T one D exchange.org. Forward slash juicebox.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. It is the blood glucose meter that my daughter uses every day. It is the one that I like the best. And I'm talking about of all of the blood glucose meters that she's ever used. This is my favorite. And it is the blood glucose meter that I think you would also enjoy using contour next one.com forward slash juicebox you won't feel like you're moving around from it because that's the real problem with using the laptop is that if you get animated or look in another direction, the microphones not moving with your face. That's all

Jen 2:09
well you know what I thought that the headset was working for like voice and not whatever it's called sound so I moved away from it to talk but I'll move closer. So let me just set it up on this.

Scott Benner 2:24
That was great. I'm keeping that in what was that? You just knocked over

Jen 2:28
Mr. Potato Head Great.

Scott Benner 2:30
Mr. Potato. I was gonna guess an old can of baked beans that had been left out but I don't know. Something very tumbling.

Jen 2:40
Okay, there's a laser gun down here that just went off. So I'm just gonna go put that in the grim. Oh, so it doesn't go off during the interview

Scott Benner 3:03
don't think she means like a real laser gun. You don't have like access to real like, like space warfare, right? You're just like a toy? Yeah, that's fine. I had a lot of laser guns when my son was little. We used to have Jennifer, can we start with a silly story? Sure. Okay. So when I was a teen or a young adult, probably in that 1921 range, laser pointers, suddenly were available in the world had never been before these super strong things that would just shoot this red dot. I mean, so far away. And we got a hold of them. I am embarrassed to say that they were incredibly expensive back then, you know, it was some something that a person in my financial category should not have been buying. But we we ordered them online, they took forever to come. And then one night, we went up on the roof of my friend's house, which was across the street from a restaurant, a couple of shops at a bar. So this bar is on the corner. And after hours, the drunks came stumbling out of the bar. And we took the laser pointer and put it on the ground in front of them. And much like kittens. They we could make them wander up and down the street following the laser pointer. I never laughed so hard in my entire life, I believe or not. Yeah. My wife and I were just dating at the time, I think. And yeah, we weren't married that early. And she laughed so hard. She had to pee, but your decline back a window back through a window to get into the house because we were out on this flat roof and she struggled to get through and she's like, I'm gonna pee myself. And my friend just kept walking these these guys like back and fourth. You could hear them talking to it. Like what are you? It was the best 15 minutes of my life. So oh my gosh, it's really funny. Yeah, it was good time. Tell everybody your name

Jen 5:00
My name is Jen. And I'm the mom of a type one daughter, who also has celiac disease.

Scott Benner 5:08
And Jen, you are the first person, but I can't believe it's taking this long. Actually, you're the second person, one other person did about an insulin pump. But you're basically here to yell at me. And I'm here to take it, because I want to understand what it is that you are passionate about. So can I, I'm gonna lay out a little framework, you tell me if it strikes you right or not. I did an episode with a guy named Josh, like a year and a half ago, and it was called Josh has all the fields. Josh is a very emotional person, I believe he talked about having some depression and anxiety and things, you know, issues. He's the father of a kid with type one. He comes back on the show about a year later. And he's struggling now for other reasons. One of them is that his child has been diagnosed with celiac. I don't know anybody personally diagnosed with celiac, and I'm trying to talk it through with them. And in my heart, the way the conversations going, is that this guy is struggling mightily with things. And I'm trying to, I don't know what I'm trying to, I'm trying to talk to him about it. I'm trying to help him if I can. And during the course of the conversation, he reveals that he's very, he's burdened by the celiac diagnosis, and what it means to his child more specifically about the things that the child can't have any longer. And, and this guy is, I'm not going to sit, you know, he's not ready to jump off a building or anything like that. But he's really in some serious psychological and emotional turmoil. And in the course of the conversation says to me, that the kid doesn't actually have any symptoms from celiac. And at the same time, was lamenting that he couldn't go to a birthday party and have a cupcake or if I'm remembering it correctly. And so I said, How many birthday parties does this kid go to like thinking like, maybe they're, I don't know, like a birthday party over the weekend. And this is a big tragedy. And, you know, the kids missing a cupcake every third, Thursday, or something like that. And, and he says, well, not that many. And I just, I kind of flippantly answered, I was like, well just let him have a cupcake, then if he's not going to have any, like, problems with it. What I meant was, you know, I mean, I'm, what I was trying to get at was the guy was making himself crazy. And I thought I could alleviate one, one little part of it, then you got really mad at me and sent me a lot of messages. But you were very polite about it. And that is why you're on the show today to explain what it is. I didn't understand.

Jen 7:38
Yeah, well, I think that I wasn't necessarily as mad as I was, like, just wanting to inform you, because I knew how passionate you are about helping people with type one diabetes and managing, you know, your daughter's diagnosis with her. So I just knew that if you knew better that you wouldn't have said what you said. And that's what I was trying to help you out with their,

Scott Benner 8:01
you were very, actually enjoying, please, I know, you weren't like, ranting and raving, you were just you were lit up, like you you had found like, you would get very passionate, and you were clearly trying to help me as well. But you know, you know, should I have not said mad? Okay, here we go again, you know what's gonna happen? I'm gonna get a letter from someone else's. You tried to guess like, Jen, and that? They're gonna want to know, I don't know, I just meant, like, you were you were. I mean, you weren't. First of all, it's in writing. I think it brings up a good point. I don't know that we should write to each other. But But I was just sitting here working one night, and I started getting messages. And I was like, Wow, this, like, like, and it was the, you know, send a long, thoughtful note. And I'm like, I got to actually stop what I'm doing and read this to make sure I understand it. And, you know, maybe I was defensive when I got it first. But I don't think I came, I wasn't defensive in a way that I was like, leave me alone. Like, I just I, I, you felt good about how I responded, right?

Jen 9:03
Yeah, like the fact that you responded in the first place I was happy with, you know, because I could only imagine how many messages you could get from people potentially. But I think that I'm probably just a little bit touchy on the subject, because my daughter was just diagnosed in April. And she's had diabetes for five years now. And, you know, we really feel like that's under control. And I know that you like him to get to a spot that diabetes isn't like a hardship or a burden for your daughter, and you know, it's just kind of like something different they do in life. Like, that's what I tell my, like, my daughter, she she has Invisalign, and she has to take out her Invisalign. And I feel like it's just another step that she needs to do before she eats and we got into, you know, the process of just doing that. So it was something that I didn't have to think about that often. We've been lucky enough that she hasn't been really sick. You know, so when we got the celiac diagnosis, it was just like another thing so I you know, empathize with The person you're interviewing because it just feels like you're being shot, like, again. And you have to try to recover from it. But it's not. It's not socially, it's just a lot harder. And, you know, he had mentioned that there's not that many birthdays, but there really are a lot of birthdays. Like if you think of your class, and there's 20 kids in the class, and you're getting a birthday invite, like every five minutes, and it's not just about birthdays, but it's hard. What he was saying is, you know, my son doesn't have any symptoms. And he's, I don't know, he was like seven or nine years old, and he couldn't have something even though it had no effect on him. So that's hard to try to explain to a child. And then also just trying to make your child feel normal. That was always you know, something that I had made a high priority for my daughter was, you know, you could do anything that anyone else can do, we just have to plan a little better. And, you know, there's two things, I guess that she can't do, like, you know, be in the army or fly a plane or whatever. But besides that, it's not really something that was impeding her that much,

Scott Benner 10:55
right, actually think you can fly a plane now. Oh, you can't? Yeah, that changed in the last year and a half or so. You might even be able to fly commercial at this point. They're working towards it. I know. There's the jet. I think the guy that got like the first license ever was on here talking about it a while ago. No, yeah. But think back, give it back. Like, meanwhile, she's looking to fly a plane. But that's not neither here nor there. So, so to pick through what you thought we were talking about just now for a little bit. My daughter has two things. You know, like she had had diabetes for quite some time when we found out about hypothyroidism. I know exactly how you feel. Like, you know, that idea of like, how can there be another thing, we already got a thing? You know what I mean, like Fair's fair, give another thing to somebody else. Like, why? Why do we get to, and I remember being in a hotel room with my son, while he was playing baseball, and finding out over the phone, and I was distraught, like I left the room, so my son wouldn't see how upset I was. And it was just hearing about Ardens hypothyroidism, which now, moving forward is, you know, generally speaking, not such a big deal in our life. And so I get it, I get what happens when things get layered on top, and especially when it's new. But what I didn't, what you were saying to me, that I have to be honest, I didn't have a lot of like, I didn't have a lot of perspective for is an even people listening right now might be like, I don't understand what the problem is, like, you're saying the kid can't eat a cupcake. But when he eats the cupcake, literally nothing happens. He doesn't get sick, he doesn't feel unwell, nothing happens. Why can't a kid eat the cupcake? And that's the part that I mean, honestly, I didn't have context for and I think you're gonna explain it to me. Is that right?

Jen 12:42
Yeah. So when someone that has celiac disease, so celiacs, an autoimmune disease, and it damages the lining of your small intestine. So the only way really, to diagnose it properly is to get a biopsy. So because I'm has type one diabetes, she gets annual labs for a whole bunch of other autoimmune diseases. And every year, they came back normal until this year. So this year, she had a IGA test. It's like a trans gluten something test, there's three different tests you're supposed to get, and whatever it was, came back high. So they're like, Okay, it's high, just don't do anything yet. Like, well, you know, she has no symptoms of this. We don't have this in our family. And like, yeah, we'll just continue to eat glue in and we'll do the biopsy in a couple of months. And so we did that. And then when they did the biopsy, the doctors came right out and said, like, you know, usually have to wait for the results of the biopsy, but they're like, yeah, that, you know, it doesn't look good. And what he meant by that is, I guess there's like finger like projections in your small intestine, that are supposed to absorb nutrients. And then with celiac disease, the Ottoman immune response wears down those cilia and they ended up like flattening. So it appears different and you know, sometimes it's so bad that you can tell right by you know, when when you get the biopsy, the doctor that's there, sometimes you have to wait for the results to come back. But it was pretty certain that she had it from the doctor's response. Nonetheless, he said, you know, don't change anything until we call you with the results. So that's what we did. And they called us and she was diagnosed with celiac and we had like a whole presentation some of it I shared with you. Because I really knew nothing about celiac I thought like gluten free was really like trendy and you know, just something that you know, people that were usually like really skinny just kind of complained about, you know, and I thought it was more like a health lifestyle than something that could be really bad for you and and being really bad. What I mean is, even though there's no symptoms that she's getting, it's affecting her small intestine, and if she would continue to eat gluten, because that was my next question is like, you know what she's diagnosed now, but she has no symptoms. So Can she just like, you know, eat gluten until She has some symptoms, and they said no, like, it can lead to a cascade of autoimmune disorders, cancers. Now, malnutrition malabsorption. So it's really a serious diagnosis. And you know, so you can't have the cupcake. But there's so many other things that you can't have either that you would not have thought of. And that's kind of what I wanted to also follow up with is, like, so many people, including myself, before my daughter was diagnosed was like, we'll just eat the pizza, like, you know, you're just going to be a little bit sick later, like, you know, like, your stomach's gonna hurt, you're gonna have to go to the bathroom a little bit. But that never happened to my daughter. But like, that's what I had in my mind when I hear of like, a gluten allergy, you know.

Scott Benner 15:43
But now, you know, the rest of it, which and you just explained a bunch of stuff. I mean, I guess I knew, and, but not to that detail, like I understood about the, like the finger appendages and how they get flattened out that it's been explained to me. I know about the absorption. I get all that. I think that. I think that in fact, I don't want to say in fairness, because I'm not trying to defend myself. I honestly. So let me be clear before we go forward. I don't think I did anything wrong back in that that conversation. I think if people go back and listen to it, there was a guy telling me, like, you know, he's out of his, you know, he's out of his right mind at this point. And I'm like, if given that kid a cupcake next month helps you not feel like this. I didn't mean every day, I didn't mean that kids should be eating like gluten constantly. He seemed like he was, in my mind singularly focused on this thing that was going to be taken from the kid, this idea of going to a birthday party was very focused on it would be be taken away. And I thought, Well, geez, just if it's, you know, excuse me. I'm sorry. My throat has a problem. Give me a second to take a drink. I apologize. So what I was, what I was saying was like, if, you know, if this one little concession is going to, you know, I mean, like, he wasn't just a little uptight, he he was on edge. And I thought if this one little concession was going to help him focus better, that this might make everything better, and etc. You mean, nothing's gonna happen to the to the child at all? I don't know that. I still don't understand that enough to say that. I wouldn't still think that, you know, like, you know, is that it? You know, I'm saying like, if you're in this situation, and you eat gluten free most of the time and have gluten once you're getting cancer, you don't I'm saying like, or like, or is it? Do you mean? Like, that's the part I don't understand. Like, I'm not saying

Jen 17:50
the problem is that it's like, such a vague thing, like, Oh, you're gonna get cancer, you know what I mean? Like, because, like, a lot of people get cancer, you know, like, so I can sympathize with that thought. And I think when you said that, that's something that's so easy to grab onto is like, Well, yeah, like, you know, if they're that upset, just give them the cupcake for a second, you know, and then move on. And the next day don't have a cupcake. But it was so impactful when, you know, our gastroenterologist went over, like the amount of gluten that can make someone sick, like, you know, you can't get french fries that are fried in the same oils, anything that had gluten, like we had to buy a new toaster for my daughter just to toast her gluten free bread. Like there's the tiniest amount that can do damage to you when you have the autoimmune disease. So it's not like a gluten allergy. It's like, you know, something more than that, that the smallest amount can make you sick, even though you have no other symptoms. And the thing is, once she took gluten out of her diet, she actually can feel now like when she gets gluten, so like if we went out to a restaurant that was supposed to have had, you know, a safe fryer or something. But maybe it got cross contaminated by like sitting on some other surface that had gluten on it. Like she then can feel it in her stomach. Like she still doesn't like have the bathroom symptoms or anything like that, but she can tell that her stomach feels off. So I'm just wondering if like, you know, I thought maybe she had no symptoms because that was her baseline. Just like you know, you can't you don't know that you can't see when you're a kid until you go to the doctor and then you can see you know, so I thought well, maybe that but there was nothing even looking back that I would have been like, oh yeah, like I think she has something going on with her stomach. Like, there was nothing like that. Yeah,

Scott Benner 19:38
I understand. No, I definitely do understand and I and I want to be clear, like, I really appreciate you coming and explaining this to me and to everybody because I mean, I got done with that episode and I never thought twice about and I heard from you. And then I would have to say in fairness. It was listened to many 10s of 1000s of times and I only heard for about four or five people on it, but I still heard from four or five people about it, who, who all rubbed up on the same exact thing that they caught your attention. And so that's the thing that I'm trying to understand is are you this is gonna sound accusatory and it's not, I'm just, are you more focused on it because it's new? Or, because when I brought this up to an I brought this up to a medical person, and I was asking them, and I said, Hey, here's what happened. I said, this woman's great, she's gonna come on and explain it to me everything. And the person went, Oh, I bet that made them really upset. And I was, like, I said, I don't know how upset they are. I said that they're very, like, concerned about being clear about it. And the vibe was from the medical person. Yeah, in the beginning, you can feel that way. And I was like, okay, but they weren't making a medical judgment. I think they were just reflecting what they've seen in other people. That makes sense.

Jen 20:58
Like, I think that you just have to get in the groove with it. So like, I've heard, you know, people that you've interviewed with celiac, you know, and they're just going about their lives, like, yeah, you know, we can eat the meat, we can eat the vegetables, we can eat fruits. But it's just so I do think that I think I even said in my message to you that, you know, it might be just that it's all so new. And it's overwhelming, because it's definitely like Lewin is in so many different things. And I could see myself being in that position so much to be like, Oh, well, there's no symptom. So let's just do a little gluten now, you know, that I, I don't want other people to, to think that way. Because I think that you have to get into the part that it's really hard, it becomes easier, and then it's a lifestyle. And then if you're if you're sabotaging yourself by your or your, you know, child, by just letting them have it, sometimes it's like giving them a little bit of poison every now and again. And then it's not a problem until it's a problem. You know, so that's where I, you know, just wanted to fill you in, because, you know, we've talked about cupcakes, but then there's like, things like birthday parties, they certainly were really focused on birthday parties here. It's not all toys.

Scott Benner 22:14
It was just what spurred the conversation the other episode, of course, yeah, so

Jen 22:18
like, you know, like, like, you know, let's say like soy sauce, smoke flavoring, like playdough. Like, you know, you go to a birthday party, they're decorating cookies, you can't decorate the cookies. It's just, it makes things so much harder. Because if you think about, honestly, living like you have celiac, for a week, and you know, you have to look for natural flavoring, you have to see if the spices that they're using contain any gluten. And it's just ridiculous. Like, it's really hard at first. So I think I'm definitely in the hard part. But I want to make it clear to everyone that listens to your podcast, that if you have celiac disease, the only way to ensure that you're going to be safe and healthy, is to completely eliminate gluten. And then at that point, you know, everything goes back to normal and you live, you know, fine, your risk for everything is is back down. But I think it's important, you know, to say that you can't cheat a little bit,

Scott Benner 23:13
though, certainly, I am on National Foundation for Cancer research.org. It's NFC r.org. And there's an article here about celiac. And it says what is the link between celiac disease and cancer? There are three types of cancer associated with celiac disease. There's e ATL, which is enteropathy associated T cell lymphoma, non Hodgkins lymphoma, and wow, Aiden, no carcinoma of the small intestine. So but then there's a description here that says the disease does not cause these cancers, but there is an increased risk of an individual. If an individual has celiac disease studies have found that the risk of lymphoma is slightly higher among people with celiac, than the rest of the population. The overall risk varies person to person, but those with more intestinal damage have been found to have a higher risk. For those living with celiac, it is essential to follow a strict gluten free diet. Doing so protects the intestine and in turn reduces the risk of developing cancer, more restaurants if Google Okay, all right. So, yeah, I so for clarity, I've never read that before saying that I would just give the kid a cupcake if it made you happy. And I wasn't even talking about the kid being happy. By the way. I think if we remember back to his conversation, the child wasn't that upset about the food? It was the it was the the adult, the parent. Yeah, I was wondering about that in your situation. Is your kid more adaptive to this than you are or vice versa or how's it going for you?

Before you go to a restaurant you read a review before you buy a television, you read 100 reviews. Before you move to an area you learn all about It, blah, blah, blah, blah, blah. What did you do before you bought your blood glucose meter? Oh, you didn't even even look into it a little bit, did you? Okay, that's fair, it's not too late, you probably got your blood glucose meter at a time in your life that was full of turmoil. But now things are a little calmer. And you can take five minutes to find out if you're using a good blood glucose meter. One that you can trust the accuracy of one that's easy to use, and easy to transport. I am of course talking about the Contour Next One blood glucose meter. Just this evening online, I watched a conversation where somebody said, My CGM is way off. And they proved it by holding up a picture of the test they had done with their blood glucose meter. Now I won't name the meter. But in the top 10 blood glucose meters, this one was nowhere near it was nowhere near the top 10. So this is a common situation, they're using a blood glucose meter, whose accuracy is not dependable. And that's making them question a number they're getting from another device that is dependable. And it creates this sort of uneasiness that you don't know what to do next, like how do I give insulin off of this, if one thing says one thing and one thing says another, I'll tell you something, right now, I don't know what my daughter's blood sugar is at the moment, because I came into this room without my phone. But if I had the phone and grabbed a meter and tested her blood sugar, I guarantee you the numbers would be very similar. Because Arden is using a quality glucose monitor, and a quality blood glucose meter. Now these blood glucose meters are not expensive. And they're easy to obtain. So if you got one given to you by a doctor, where you bought one real quick and uh, you know, I don't know you were in a store one day and you're like, I think my kids got it, I don't know how you ended up with a meter you have. Maybe it's just the one that you thought your insurance covered. You owe it to yourself to look into the Contour. Next One. For one thing, it may be cheaper in cash than you're paying right now, through your insurance. For a lesser quality meter. These are things you should know for sure. Contour next one.com forward slash juicebox. Just take a couple of minutes, go through the webpage, make sure you're doing the right thing for yourself, it would not be difficult for you to move to a quality, accurate meter that has a bright light for nighttime viewing an easy to view screen. And if you want an application for your cell phone, where you can save your tests and other information. They talk to each other by the Bluetooth, the app and the meter. It's you know, it's 2022 stuff's amazing. Now, oh, by the way, if you don't want to use the app, doesn't matter works fine without it. Contour next one.com forward slash juicebox. Just five minutes, check it out.

Jen 28:12
I just think it's so hard to tell because she's 11 and she's a girl in middle school. So I think that at that age, everybody wants to just blend in and you know, be like everyone else. So if she was, she's upset sometimes for sure. Especially like, you know, at restaurants, they'll bring you out bread without even asking like, you know, and then I have a 10 year old that doesn't have celiac and she's 11 She just turned 12 Two days ago, but that's hard because you know, her brother can do it and she can't so sure you get some of that. And I think you know, I am also am sad for her because I know that, you know, when she goes to a friend's house, they have to ask her first you know about keeping her safe, uh, diabetes, like a really quick blurb. You know, I've said, here's the, the rescue thing, we've never needed it. But here it is just in case and then they're like, Okay, what kind of food can she have? So it's just all these additional questions to have to like, lead a normal life. So yeah, it's probably some of me, a lot of me, but it's also her and it's becoming more and more her because socially, it's just so difficult. Like, you know, that age like even she's gonna get ready to start like going somewhere for dinner with friends. But that's not like a normal experience where you could all share an appetizer or something like that, you know, like, so

Scott Benner 29:32
generous with both ad for right.

Jen 29:35
Yeah, I think everyone would be sad for their kids. When do they have to do something different and I don't think it'll last forever. Like you know, it just probably in this moment until she find some like things in her groove of, you know what she likes and then it won't be as big of a deal but no, I agree. I'm sounding like the other guy that was

Scott Benner 29:54
well, I don't want to paint you in that boy. I thought, I thought if I'm being honest, I thought you You were probably motivated by exactly what you said earlier. I think you like the podcast, I think you think it does good stuff for people. And you didn't want something that felt like misinformation to be involved in it. And I genuinely appreciate that. I also did think that your enthusiasm did come from a place of being more newly diagnosed. And I imagined that part of that was what you just described, just this, you know, this thing had just been taken from your child. I mean, I heard it in Josh's voice, you know, something came along and took something from his kid. And then it came along again and did it again. And, you know, and Josh, if you remember has the extra added issue of he has type one. So he had a little bit of his own, you know, what are called childhood trauma around diabetes, that it's baggage. He knows how it affected him. And he's worried for his child as well, you know, and while you don't have I'm sorry, I might be speaking for you don't have celiac or type one, right? No, no, but no, my family. Yeah. Oh, really. There's just no one else, just your lucky daughter. Yeah, but

Jen 31:05
the thing is, like, there has to be someone else. Because what they said about celiac like, in doing my research, it said that like 83% of people are not diagnosed, or misdiagnosed that have celiac. So when my daughter was diagnosed, they said it's genetic. So you know, everyone in your family needs to be tested. So we had to test my two year old, my nine year old, my husband and I, and all of our tests came back kind of normal, except for my two year old, his levels came back elevated, and also his total IGA was low. So it was like an IGA deficiency, which puts him at risk for autoimmune diseases. So we need to monitor him. But you know, my parents, I've lived with five generations, you know, I knew my grandmother, my great grandmother, my great, great grandmother. And you know, we have a pretty large family, and no one else has had type one diabetes, or has known they had celiac. So,

Scott Benner 32:04
anybody? I'm sorry, anybody ever run to the bathroom after a pizza party or something like that? Like, like, you know, I mean, can you look back and see it somewhere? They just didn't know.

Jen 32:13
I feel like that. Yeah. But the other thing is, like, if you go to be on celiac, it actually tells you like, which I was really surprised about, like not telling everybody what your diet and how much you have to cut out is before you ask them to get tested because they won't get tested because they'd rather not like, give up whatever they can't have.

Scott Benner 32:35
I say that you don't tell them. Hey, we need to get tested to find out if you have to give away your 20 favorite foods. Yeah, people are like, Yeah, I'll do that next week. Thanks. Yeah, no, no, I listen. It's uh, I mean, I have a ton of compassion for you. I don't know that. I don't have something like, did you? Um, when you said your whole family got tested it was everybody biopsied?

Jen 32:59
No, no, there's a blood test. Okay, yeah. And then if one of those come up high, like, you know, I guess you could have a high result and it not be celiac. So the only way to diagnose it, you know, confirm the diagnosis is with the biopsy.

Scott Benner 33:14
Okay. Yeah, I mean, I have, like, when my iron was like, I don't know how much you listen, this podcast, but when my iron was low, I had a doctor wanting to test me for celiac. And he came back saying, like, you have a gluten sensitivity. And that was, you know, as much as he would say. And I was like, okay, you know, and I think there were some, like, small he scoped me was a big fun day. And I do think I had some of that damage that you spoke about to like the, the fingers in the, I don't know, obviously, I'm at a loss for a lot of the technical words. But my bigger problem was I had like some Barrett's esophagus, Junior, sick, this, this is gonna sound scarier than I think it is. But hold on a second. Keep googling. I guess I have something called Barrett's esophagus. Jeez, I don't know, like it's a condition where flat pink lining of the swallowing tube that connects to the mouth of the stuff that connects the mouth to the stomach with the esophagus becomes damaged by acid reflux. So I had some acid reflux. And then you get kind of this thickening, you know, lining, and that makes you more susceptible to a certain kind of cancer. So now I have to I think you have like, I'm reading this now. If it goes untreated, which I guess would mean if I just continued to have the reflux, I'd have like a 60 times higher chance of developing developing esophageal cancer. Which the five years are I've already just not good to begin with. So I just like I use the DNS it's at first because I just want to right on top of it, but then I realized, like I have this reflux because I'm eating something my body's not happy with. So I cut out I've talked about before on the podcast, I cut out all kinds of processed oils. I don't really deep fried things anymore. In a number of other little adjustments to my to my life, I also eat in more of an intermittent fasting window so that my body's not constantly digesting food, especially at night. That kind of stuff and I don't take the the reflux medication anymore, and I don't have reflux anymore. So, like a diet change, fix that, for me. Anyway, this is loosely related. But I did see

Jen 35:39
further though, when you're like levels came up that you ever had a gluten allergy? Like, how do they know that? That wasn't silly. I claim that it was causing the other problems.

Scott Benner 35:47
Yeah, I, to be honest with you, I don't know. Right? Like he, we were going through so many things, trying to figure out what was wrong, because what was really wrong was I was shutting off. Like, I look like a robot whose battery was just draining slowly. And by the time we got to the guy who wanted to look for celiac, I was like, Dude, my first is really low. I think he just gave me an iron infusion, like, I'd be okay. And he made me not eat gluten for a month before he would do that. And I have to tell you that

Jen 36:17
it didn't. I mean, that's something else that can be caused was celiac, you know, so you can do a biopsy, yeah, you

Scott Benner 36:25
can absorb the the iron through your digestive tract. The same way. Now, it looked like I was going to be getting the infusions forever. Because I would get them. And then it would deplete again, because I just wasn't getting it through nutrition. And taking an iron tablet wasn't helping me either. But I soon learned to mix the iron supplement with a vitamin C, like in sorbic acid, take them at the same time and like it's like turbo boost the the iron into your system, so I don't have to get the the infusions any longer. Which by the way, really help quickly. Because no, I just take like an iron tablet like twice a week with a vitamin C, and I'm okay. It's just I mean, the whole thing. The whole like Jenny, and I've been talking about lately, like your gut, its ability to pull up nutrition and the need for it to be balanced. You know, with the bacteria that's in there. It's all just incredibly important, and probably really tied to autoimmune issues as well.

Jen 37:30
Yeah, I, you know, I can't believe someone had mentioned something when Emma was a young about her gut and health and how important it was. But it was someone I think I heard you say it on the podcast the other day, like if you heard yourself talk about, you know, these vitamins and stuff, you would have been like, oh, you know, what this guy like, he seems really nice. But he's really like out there. And that's kind of like my whole point of view to the, you know, I can't believe that what she said is probably pretty accurate. The other thing about my daughter is, you know, she's been overweight, like her whole life since she was three. And that's when the person that mentioned that gut health was telling me, you know, I think there was a book they recommended, like called Wheat Belly or something. I still haven't read the book, because I was listening to it. And then Emma was diagnosed, and it was making me angry, because I don't know, I was just, I was too much at one time for me. So I never actually finished the book. But in listening to your podcast, and just like some of these things that she said, it seems like, you know, gut health is like, so important. And it seems to have been, you know, something that, you know, causes a lot of these issues or is seems like it's being pointed in that direction, at least. Right? Okay. And then even, you know, the role of vitamins and probiotics and things like that, that I never would have thought of, you know,

Scott Benner 38:51
I do wish I understood it earlier in my life, because I've carried weight since I was like, I don't know, in my early 20s That never really been commensurate with how I eat or my activity level. Like, I'm, you know, I don't know, I, there's certain words we're not supposed to use anymore in polite society, but in my personal life, like, I'll tell people like, I'm the fattest person that doesn't eat that you'll ever meet in your life. You know, like, I just don't take in a ton of calories. And it doesn't matter. Like my body just like if I even ate in a reasonably like, quote unquote, normal way. Today, if I just had, I don't know, some carbs and you know, one little junky thing, you know, but ate pretty well other than that had three big meals, I'd weigh five pounds more tomorrow, like my body would start like retaining water. And it's just, it's, it's weird, and I'm sure I'm sure it's likely to do with something with all these things that I figured out for myself on my stomach and you know, the things that I've been able to pick through. I thought for sure getting the iron thing together was going to be like I honestly like in the back of my head. I was like, I'm probably going to lose like 20 pounds when this all gets straightened out. And then, you know, that didn't happen. But I'm also old, so I don't know if that has something to do with it. And

Jen 40:10
well, that's the same thing with my daughter, though, you know, like, I thought that even that for her that, you know, well, she's not really eating any carbs now, because she doesn't like the gluten free bread and you know, the pasta, we don't have pasta. So she's literally eating like fruits and vegetables and meat, and she's still weighing the same amount. So that's another thing that we've been looking into is like, you know, what's driving this? And like you said, it's probably something to do with, you know, her gut, or, you know, I don't know that for sure. But some other kind of thing that we don't know about and haven't been looking for everything that like she's been diagnosed for hasn't even been on my radar, you know. So it's just crazy, because I hear people like having such a hard time to be diagnosed with celiac when they're having all these symptoms. And, you know, we weren't even looking and she was diagnosed with it. So

Scott Benner 40:54
how long? How old? Is she now?

Jen 40:57
She's 11. She's 12. This week, I'll get used to that

Scott Benner 41:00
happy birthday. And has had this this diagnosis. fussy, like just over six months. Really? Yeah. Okay. And but when was she diagnosed with type one? How

Unknown Speaker 41:09
old? She was six years old?

Scott Benner 41:13
No. Okay. Oh, that's a while ago, then. Yeah. How was all that going? With the diabetes piece? Like it? Has it always been? Well, I guess where is it now. And where did it start?

Jen 41:28
Um, she has always been like older for her age somehow. So nothing was ever that terrible. As far as diabetes, I was so lucky for that, because my son is really the opposite of that, where everything is an issue. But he, she started off on injections we got on the Dexcom just live out two months, maybe a month, actually, after she was diagnosed. And then we had the Omnipod in April, and she was diagnosed in December. So we got on everything really quick with technology. And I looked into looping. And you know, I kind of just followed the page a while, then ended up taking the plunge about two years ago. So that's made things a lot better, so much better, especially like sleeping, I can't believe you know, how we used to have to wake up in the middle of the night and do the finger checks. And it's just not having that anxiety about that. So it's going really well with diabetes. And I'm also very excited about the Omnipod five coming out and no getting that technology. So I think that'll make things even easier. And that's what it was, it was just that, you know, everything was so smooth. After five years, that it's just another thing. And like you said, you know, everybody has something or you know, we already have our thing. That's what I've always told them is like everybody has something you don't know what everyone has. And it was just like another thing. So

Scott Benner 42:49
they were and then somebody came along was like, and no bread. She's like, Wait, what happened? I already got the Hell yeah,

Jen 42:55
I was I was good at this. Why another thing Oh,

Scott Benner 42:59
my goodness. But she deals with a reasonably you're, you're, you feel like she's okay. We're at first

Jen 43:07
grade, she was like getting presentations to her classroom about like injecting herself and stuff. So she's really like an outlier when it comes to, I think kids in general. And then especially with handling things that are a little bit mature, more mature for someone their age. So

Scott Benner 43:22
I'm gonna have to have Arden back on the show at some point. And I'm going to talk through this, I'm gonna get her side of the story on what, what happened last night in our house, which I know is going to shock people when I say out loud, but Arden is that she's like 17. She's going to be 18 in April, May June, maybe like four or five months. She's had diabetes. And she was too. And last night, Arden gave herself her first injection. She's really never given herself an injection before. And wow. Yeah, so she was on. She was on she's on the steroid pack, which is over today, thankfully. So we've been going through a lot more insulin than normal. And a couple of times during the last couple of days in the story pack, we've injected some insulin to try to save the site because we were like you're flooding the site with with insulin, I think, at points during the story pack Ardens. Basal went from 1.1 to four units per hour, just to stay on top of the steroid pack, but as the steroids titrated down it, you know, there were times when it didn't need all the Basal and then times when it did and there were times that got ahead of us and we anyway, we would knock it back with this with an injection trying to save the site a little bit. And so last night, I said to her, Hey, we got to inject. And I drew up a needle like while we were talking and I put it on the counter. And I just said why don't you do it? And she goes, alright, and then I said uh, you know, I'm like you're gonna go away to college. I'm like, at some point. Like your pumps not gonna, like it's gonna get knocked off or something's gonna happen like You're going to need to know how to inject and it's gonna need to be, you know, kind of like fluid and seamless, you're not gonna be able to sit around and she's like, okay, and she sat there for a while, like giggling and laughing and holding it and, and then she's like, I have to go somewhere private, and she disappeared into the bathroom. And anyway, I'm gonna let her tell the rest of the story on the podcast one day, because she didn't come out of that bathroom for about 90 minutes.

Jen 45:24
Oh, my gosh. Unbelievable. Yeah, it's funny, like how you get so far away from it, though, that that's not even like something that you probably have to do all the time. I mean, I'm assuming you probably aren't injecting manually very much or, you know,

Scott Benner 45:37
yeah, hardly, maybe a handful of times a year. And you know, or something like that. But it's just, I mean, she was so young, when we got the pump, she was four. And she had diabetes when she was two. So two and three, like I was injecting her, and it just never kind of happened. And then we've had just really such good success with Omni pod for so many years. It's just never a thing. And so, if it comes up once or twice a year, where you have to inject real quick, you know, to check to make sure a site's Okay, or something like that. Yeah, he's always just sort of been like, but can you do it because like, I don't know how to do it. It was never like, out of like, like, I don't want to do it, it was just, it was easy and quick, you know, and then the next thing, you know, you look up and it's, you know, 15 years later, and you're like, Oh, whoops,

Jen 46:24
that's, I kind of wonder how Emma would be now because she was doing it when it was like first grade, second grade. And it was like, you know, something? I don't know, that was different. And I think I don't know, if she I don't think she would be scared now to do it. She hasn't had to inject herself. I mean, she has a stomach virus right now as we speak. And it's our first stomach virus. And you know, since she's had diabetes, and I spoke to the doctor yesterday about giving manual injections, and like, I had to look for all this stuff around my house, like I had it, but it was just like, you know, we haven't had do this for so long that the thought of that might be intimidating at some point, if you get away from doing it. So I think it was good that you know, art and decided to take the plunge and do it ourselves. Something, you know, in the back of my mind, I'm like, you know, I better start doing this occasionally as well, because you just take technology for granted. Sometimes

Scott Benner 47:13
you also are likely not wrong about that, because I might have told this story before, but I'll tell it quickly here. You know, she stopped using injections two years into diabetes when she was four years old. And we didn't have any, like reason to inject for like a year or two, you know, after that, and then one day, I just was like, I don't know, if anybody, like can feel what I'm saying. But sometimes you put a pump on, you're like, I'm not sure if this site's working. And if you just inject some insulin, and you suddenly get some movement, you go, Oh, maybe it is the site. So this happened one day. And I just called her out into the kitchen. I was like, Hey, I gotta give you some insulin, and she brings the PDM for the the Omni pod and hands it to me. I'm like, we're going to inject it. And I pulled out the needle. And she like, you know, it was like, like a Bugs Bunny react. She said, whoa, whoa, whoa, whoa, whoa, I was like, what she goes, what is that? And I don't mean like, again, she was probably like, six by then. And it wasn't like, what is that? Like? You're not giving me a shot? It was what is that? Like? I don't know what you're showing me. Like she didn't even recognize the search engine. That floored me. Because I had kept track in the first couple of years. And between finger pokes and injections, she got poked like 10,000 times in two years. So I'm like, I'm like, you don't remember this. She had no recollection of what it was at all.

Jen 48:35
Yeah, fascinating. Well, even you talking now like i when she said manual injection, I have like those little skinny, I guess, syringes that I was planning on using when I had to do the manual injection. And now that you're talking, I'm like, wait, every time we go on vacation, I get like scripts filled for those pens that I could just put the needle tip on. And that's like how we used to inject her. So I don't know why they said like, when you have to give her a manual injection, I thought you had to use like the scariest tool possible to go and try to give her an injection. I could have just used her pen, you know? So

Scott Benner 49:06
I'll tell you that this is just go. I'm sorry to mean to cut you off.

Jen 49:11
No, it's just like a dry run for something. Something's like really serious that we'll have all our stuff together now. And you know, know, to do this a little bit more often to be prepared. So

Scott Benner 49:18
yeah. Oh, it's hilarious. Because we were. I mean, you know, she stopped. Like I said, she stopped using injections when she was four. So that makes it like 2008. Maybe? And no, why six months ago, I said to the, the endocrinologist, the nurse practitioners, like, hey, while you're writing out prescriptions, can you write me a prescription for a box of needles? And she's like, we gonna start using them again. I'm like, No, I just ran out of them from 2008 because we had had a box left over and they how long they lasted, you know, and, and she's like, Oh, sure. So she just writes the script. She goes, that's crazy. And when they came to the house, I was like, I have not gotten a prescription for needles filled in Like, I don't got 2018, like 13 years or more. That's how long that box of needles lasted in my house. So this next box should last. Maybe, you know Arden's 30s, maybe? Yeah. But it's just it's, you know, I just want to tell you, like, I take your point, like, it's, you know, things come and go, you have to kind of keep up on stuff. And, you know, she could just look, your daughter might look up one day and just be like, I don't even remember doing this. Because Arden, I'm telling you back then she was floored, whatever that needle was, she had never seen it before. And that confused me. Okay, so I want to talk a little bit about how you end up eating with celiac. So like, let's be more specific. And we were joking earlier. Like, we're only talking about cupcakes, but we're talking about wheat, right? No wheat.

Jen 50:53
Yeah, wheat, barley and rye. There's like a handful of random ingredients that you just have to look out for like, natural, natural flavorings, smoke flavorings. marinades, they even say like lipstick and lip glosses and things like that. So you're obviously not eating that. But it is. It does feel normal when you're making dinner, but it just kind of paralyzes you at first because you have to be like, Okay, well, what am I making? Exactly? You know what sauces that does? I didn't think of soy sauce. For some reason. I don't know why. But that was something that I was like, okay, so you have to have gluten free soy sauce, too, which is totally doable. It's more of a social thing about going out. And I was, you know, we're a busy family, I know that you have your son in baseball, and like travel baseball's crazy. And sometimes you have all these games, and you just have to pick up something on the road. And that's what makes it hard is like adapting to those situations and knowing you know, how easy it is for, you know, even a fast food restaurant, if they really wanted to cater to people that can't eat gluten, you just have one fryer that you put the fries in, that are separate from all the other stuff that you put the breaded stuff in. But when I even when, you know, Chick fil A is known for like, having a dedicated fryer at most locations. But I talked to the manager and I'm like, do you have the gluten free fries? Are they gluten free? And she's like, No. And I'm like, Okay, well, you know, in the celiac community, it's, you know, well known that you can have say fries at Chick fil A, I even actually went there to get french fries, because I knew we were going somewhere else for dinner when we were on a vacation. And I just wanted her to have a normal experience. And she's like, I'm like what exactly like I depressed like, what exactly about the fries are not gluten free? Like, do you have the separate fryer? And she's like, yes, we just don't have gluten free french fries. And I'm like, well, it's just potatoes. And she's like, Oh, then they are gluten free. So I just felt like uneasy that I was able to, you know, talk to someone talk someone into basically them being gluten free. So it's just like, there's not enough information. And it's so easy to make accommodations that I just wish people knew that like exactly what it was.

Scott Benner 53:11
You know, I like what you did. I think instead of trying to educate somebody just like listen, take those French fries, and put that fryer over there and then give them to me. And that's all you need to know. Thank you. These are gluten free now. Thank you very much. Yeah, I mean, you're not gonna, you're not gonna, you're not gonna educate everybody. It's worth trying. But you know, by the time you get that person educated, she's not gonna work at Chick fil A anymore.

Jen 53:35
Yeah, but you know, like, even just saying, okay, yeah, you could just put them in that fryer. Now she knows, you know, there's, she doesn't need to know the whole story behind everything, you know, but I think there's a lot of places like that, that it's like, well, if you just do this, then you also have gluten free. And that would actually be good for your business. Because you're, you know, helping a whole bunch of people that can't eat your product eat. But as far as like, I guess eating at home, it's just, you know, making sure there's no gluten and things and that's really just what it comes down to is looking out for those ingredients. I guess I just don't have them all memorized yet. And that's why it's harder to because it's I'm still learning.

Scott Benner 54:07
Super interesting while you're talking like, trying to I'm trying to wonder where all places I would find gluten. And I realized it's very similar with carbs for people. Like, I remember being with somebody one time and I was like, here, count the carbs in this plate. And they did it. And then I said, Okay, where'd you get them from? And they did it. And I said, you know, you didn't count the ketchup. And they were like, well, that's a condiment, I suppose carbs in it. I said well, not Yeah, right. Yeah, there's normal right right. She's like not many right? I'm not really as a couple tablespoons of ketchup here. I said this could be depending on what ketchup it is. This could be 10 carbs. You know and honey mustard and other little things that condiments that people don't think about or, you know, they were they just get it in their head that a slice of bread is is 20 carbs, but then you grab another brand of bread and it could easily be 28 carbs in how do you keep all that straight?

Jen 55:01
Yeah, and then even like, you know, you go in, there's an appetizer of like, keto smoked wings, and you're like, oh, there's smoke, they're not fried. They'd be good. And like, like, you don't fry these, right? Like, oh, no, we do fry them. But they're smoked. Why are they also fried? You know? And it's like things like that are like, you know, barbecue rub and the barbecue seasoning has gluten in it. Oh, and it's like, Well, why do you have to do that, you know, everything else was gluten free until you got to that seasoning. And I'm not saying that to people, I'm just saying that in my head, you know. So it just limits your options. And that's really, that's what it comes down to, I guess it's more of an emotional thing. Eventually, it will be fine. Like you said, you know, you're not going to have as big of an option of everything. But it's also such a pain to have to ask people like, oh, well, you know, how about this do you have, it's sometimes it's just easier to eat at home. And that's what I see is like, you know, when I'm part of different groups online is that there's like, oh, you know, I just feel like, I can't go out or blah, blah, blah. And I just, I didn't want her to feel like that, you know, and I know that you don't want that for your daughter, either. You know, so I when you were having the conversation, I just knew that. Even now, you said you would still have reached the cupcake. I hope by the end of the podcast, you understand that she really couldn't eat the cupcake. Because it's causing problems and it's setting her up, you know, like you're trying to set up good habits with type one diabetes. You can't you know, you just kind of have to it's not your body that you're trying to help either that it's not your, your diagnosis. It's not your disease. So I feel bad, like, you know, gambling a little with her health to

Scott Benner 56:40
go. Well, I don't disagree at all. I mean, but so can I play devil's advocate for a minute, just for fun. So we have some that disagree about because it's more fun. We disagree. And by the way, I don't disagree with you. I hear what you're saying. But let's think you ever ever cigarette? Yeah, yeah. Are you a smoker? No. Why did you do that? Jen? Didn't you know your your hell?

Jen 57:06
What's that? Is all my friends were doing.

Scott Benner 57:09
That's how that cupcakes gonna get eaten, Jen. That's what that's, that's my mom kind of saying. Like, I think that intentions are terrific. And goals and planning. It's all like, it all makes 1,000% sense to me. I don't know that Josh's kid is never going to have a cupcake again. Like that's the end and and maybe they maybe will and maybe won't. But I didn't feel like it was worth Josh feeling the way he felt about it like that. And so I'll relate it back to myself. You know, I do my very best to keep Arden's blood sugar between 70 and 120. I mean, I really, really, really do my best. And she does too. And right now her blood sugar is 111. And I'm pretty happy with it. It she got up in the morning, she had a little low overnight, she got up in the morning at around 90 and started heading out to school and it started to pop up a little bit. We had forgotten to reset an override to deal with the last day of the steroid. So we didn't need the override overnight. But we needed it during the day. We got it set off for blood sugar went up to 140 We got it back down to 111. Now I imagine in the next two hours, it's going to be more like 85 Now that is hurting Arden. Like there's it is right? It's I don't know if it's taking 30 seconds off the end of her life or if it's going to give her a complication when she's 78 instead of when she's 83 like you know what I mean? Like, I don't know what it's gonna be. But I don't know that it's avoidable at this point, like, you know, I mean, like, I I think it's gonna happen. I think blood I think my blood sugar is gonna be 140 for a while today. I think that there are some things I apparently can't eat, but I haven't. I don't know. I'm 50 like, am I never gonna have pizza because the guy said I have a gluten sensitivity. Like when I eat pizza. Nothing happens to me. And then my then I start extrapolating, this is just for me. But I started saying to myself, yeah, my mom's 79 I see what 79 looks like. It ain't great. You know what I mean? Like, it ain't bad, but it's not like she's not up jet skiing every day. You don't I mean, and so like, if I go out at 79 instead of 83. But I had pizza when I was 55. Okay, like that's sort of where I'm at. And I know that's weirder when you're talking about a child, obviously, because there's way more unknown years in front of them that I have. But I'm just saying that I think that's the I would think that for most people. That's the the reality of the situation. Like I wonder how many people We'll never have that cupcake. And I'm not obviously not certain of that. And I'm sure plenty of people will and I say, you know, good for them. Like, like, seriously, I mean that in a very supportive way, if that's what they're gonna do, I think that's what they should do. I still think in Josh's specific situation, until he feels better, I would feel badly for him being that tormented over the exact scenario that he brought up in that episode. Not that, and I don't see, imagine

Jen 1:00:27
that being though, like, I really, I'm still at that point, because I can't see you saying, Well, I'm just going to be happier. And my child's going to be, you know, a little bit sick, because you'd want to put your child first. So if even though they might go blow it by, you know, smoking or whatever, we were equivalent to, you have to do what you can while you can do it, and then, you know, like, even with blood sugars and keeping that tight of control, like, you know, eventually our children are going to go to college, and they're gonna go to a party, and they're gonna be crazy for a little while, maybe even a whole semester. And they, you know, but why not do what you can do now? You know, I guess maybe there's a tipping point. And maybe Joshua's at the tipping point, right? I just know, there's a lot of people like me that were listening that aren't at the tipping point, but have a little thing in the back of their head saying, you know, what's one cigarette? What's one cupcake? And it's just, it's a habit, you know, what I mean? It builds habits. And that's what you're trying to do is be a role model. Oh, yeah. And so even though you're saying that, I think that like you weren't in Josh's position, I hoping that if I think even Josh probably wouldn't do that in order, you know, just for to make himself a little happier in that moment, he probably just needs to work through and get used to his new normal, you know, the way that everyone does when there's a new diagnosis, right,

Scott Benner 1:01:42
so I'm gonna argue the other side now. I'm also gonna like, and I'm also gonna say the one thing about Josh specifically, I'm so sorry, that we're bringing them up so much, but I know is that I don't think that your description of what I was talking about is commensurate to what is happening to him. Like you're saying, like, what you said was a couple of times, I let you say it a couple times, to be sure that's what you meant. Josh to be a little happier, and his kid gets to be sick. Like in that. I feel like Josh was at a tipping point, like, emotionally. I'm not just saying that like Josh's day was a 97. And it got to be a 99. Because he let the kid have a cupcake. I think Josh's day was a two. And I was trying to keep Josh from like, running off a cliff. Like with with what I said, and I don't know that I even was, I don't even know that I was talking about the cupcake. I think I was like more bigger picture saying like, man, like, you can't stress this much about this thing. Like it was it's it was burdening him. Yeah, you know what I mean? So that's that. Now the other side of it. I think you've listened to this podcast long enough. I'm all about setting up good examples for people. And I'm all about the long game. And I definitely believe it's setting up, you know, a structure for your daughter for Joshua son or for anybody else, where the expectation is, you know what I might end up at a birthday party, I just don't eat cupcakes. And that's that, you know, I bring my own thing, or I wait till later, or I pick around, I know what I can have in a party that will help like, I hear you like long term health is super important. Their kids, they're impressionable. Now, this is your chance to put them in the best headspace that you possibly can. I mean, I think you understand, I completely agree with that, right? Yeah, yeah, I still probably give that kid that cupcake. And I know those things seem completely incongruous to you at the moment. And I'm not in that situation. So maybe I'm just flat out wrong. But I see why you shouldn't. I see why you don't, I see why I shouldn't have said it. And I'm just trying to say, like, real world, I still don't know if I was in his situation, if I wouldn't make that concession to try to get to a better place. Because I don't know that he's and I think

Jen 1:04:05
the important part is like, just how you said if you were in his situation, so I think in certain situations, obviously, you know, survival, you know, so if you're at such a point that, you know, your quality of life is suffering now, instead of the risk of suffering or someone else's health suffering in the future, I mean, you got to self prefer, you know, preservation and do whatever you need to do. Right. So if you say with that disclaimer, I think that's one thing. Just, you know, I didn't want someone to catch on to it and be like, yes. And I also hate that we're reinforcing everything about gluten with stereotypes and like pizza and cupcakes, because I think that's like how people think like, Oh, you just can't have the cupcake. You can't eat the pizza. But we're just using that example because it's something that everyone knows. Yeah,

Scott Benner 1:04:53
right. Well, it's interesting even with that, so it's interesting to listen to you. Be protective. Have the conversation, like, because when you really stop and think about it, I was having a conversation with Josh, and I was speaking to Josh about his specific situation, you applied it to your situation. If you and I were having the same conversation, I might have said something completely different to you, because your situation would be different. I think it kind of lends to how personal Podcasts can feel. You know what I mean? Like, I'm talking in your ear, and, you know, it's, it can feel like I'm talking directly to you. Like, if you step back a little bit, you know, I wasn't talking to you when I don't. And I would say that, I don't know how many people heard it and thought, Oh, silly me. I've been Feeding My Kid gluten free all these years, I could just I don't think I talked to anybody who's gluten free. And eating a cupcake is what I think I'm trying to say. But I can see the concern. And I do think the concern is rooted in where you are in the journey. To some degree. Maybe I'm wrong. I'm not sure.

Jen 1:05:59
I guess the other thing is, even if it's not, you know, so the people that are gluten free or dealing, you know, not dealing, I guess caring for someone that is gluten free. It's it's hard to not have people understand, you know, like that don't have a gluten allergy or gluten allergy or, you know, celiac disease to be like, you just kind of seems like it's a pain to everyone, you know, like, you go over their house, and they have to have this and you have to ask these questions. So I think that's what it is to so even people that are listening, they're like, Well, why can't they she could just have a cupcake. Sometimes, you know what I mean? And, and, and that's the other part of it, which I'm saying more like, socially, that bothers me about celiac. And it's not something that I hear people talking about a lot. Until, it seems like it's no big deal until you have to like, find out what's in everything. And then someone that has, it will be like, oh, yeah, it's really bad. It's worse than type one diabetes, because you have to do this and you can't compare diseases. I don't agree with that all like the whole statement. I just said, like, I would never compare diseases like that. I'm just saying that, like, it feels like almost like when you have a kid and you don't really hear about how having a kid is so hard until you actually have a kid. And then everyone's like, Oh, yeah, like see having kids really hard. I don't know, it's like, are you so I just wanted other people that aren't in aren't, don't have a diagnosis or, you know, don't have someone they care for, to know that it's not just something that people that with celiac, if they are actually, you know, taking they don't have like, a mental health problem that they're trying to overcome? Or, you know, if they're in a good place, like it is serious that you can't just make exceptions sometimes. Yeah.

Scott Benner 1:07:33
Oh, no. 100% like to be, you know, again, was there a lot about clarity here today? Yeah, I hear your point. Like, there isn't a world where somebody could like six months from now be in a situation and that kid gets brought to their house and the parents like, hey, look, the kid can't have gluten. And you're worried that that person like, you know, I heard on a podcast like six months ago, yeah, like a cupcake if you wanted to, and you know, like, and then they, they have that misunderstanding that makes it more difficult for you, for your child for everybody. And I see that correlation, you're drawing between, like people not understanding things about other diseases, diabetes as an example. And they, they also don't understand about gluten, or people who even had the feeling that honestly, you said you had probably seven months ago, which it just seemed like a kind of fufu thing that fancy skinny people talked about wasn't real, you know, and now you know, it's real. I hear you get I mean, I listen, no one should. No one should be just like, assume they know something about your life. And, and not get the details before making some sort of a decision or saying something crappy to other people. But I mean, we know it happens all the time, like just this conversation, to me is somewhere between the way things should be the way things have to be, and the way things are. And, you know, it's a, it's an uncomfortable mix, sometimes of how you get to these understandings, because you're going to meet, you're going to make a small group of friends who really understand your daughter's celiac, and they're going to, like, earnestly take care of her. And same with diabetes, and there's still going to be people who don't understand and you'll be surprised some of them are going to be in your family, you know, and you're gonna end up at Christmas dinner with someone's like, just give it to her Christmas, you're gonna be like, great, thanks.

Jen 1:09:24
Maybe I was that person, you know what I mean? So that's why everything that you just said, like, last three minutes, is exactly what my point I think was most important for me to have said, because, you know, that just completely summarizes how I feel and what my biggest concern about that comment was, like, you know, I don't even know if like the risk of cancer which is a very real terrible risk or you know, all the other things. We talked about autoimmune diseases, if that was what I was most concerned about, or if it was people just not understanding why I have to do this and what I'm trying to protect, you know, and, and everyone that has celiac,

Scott Benner 1:09:56
well, you did a really wonderful job of speaking for yourself and I really appreciate it I would like to take these last couple minutes. If you have a couple extra minutes to congratulate each other, then I'm going to tell you why. Because we ran into a situation where I said something that you were very much like, Whoa, what the hell, right? And instead of running to the internet to cancel me, or instead of yelling at me, or instead of just being angry, or whatever people do when they see something that they don't immediately completely agree with, you reached out like a human being. We had a lovely conversation online, we set this up immediately to do, I was right away like Jesus, like, is that real? Like, I didn't know that. You know what I mean? Like, like I right away is like, Oh, let me make sure I understand it bigger picture. And you've now colored how I'll talk about this going forward, you know, but in fairness, I've had a number of conversations with people with celiac, no one's ever really brought this up before. And maybe that's just a, you know, an implication of them not even being educated well. And so I'm, I'm super grateful for it. What I'm trying to say is that without this conversation, without me saying something that needed to be clarified without you clarifying it, without being, you know, vicious, you know, which happens online all the time, we actually did a good thing, right? We had speech, it wasn't perfect, we made it better, that's going to help people moving forward, instead of just saying, the guy on the podcast doesn't understand celiac. I'm not listening to this anymore. Or, you know, I'm gonna make sure that my friends don't hear this or whatever. We just actually, like, talked about it like, people. It's nice. Yeah,

Jen 1:11:46
that's great. Yes, yeah, I had a professor once that told me that, you know, there's two reasons that disagreements exist. And it's misinformation, or differences in value judgments. And that's really like the two things that it comes down to. So that's kind of the approach that I tried to take, when I hear things is, you know, having a conversation and saying like, Okay, does this person really understand, like, what the facts are? And then if not, then I'll try to provide some information. And, you know, after I provide the information, difference in value judgments, that kind of comes down to the other part of the conversation you had with Josh, you know, his mental health may have been more important than that pressing issue at the time, and that's where your advice came in. So I think that's a good thing to keep in mind. And I appreciate how you received the information, you know, and so I reached out,

Scott Benner 1:12:32
I was really grateful that you reached out honestly, in my mind, Josh, somebody brought this up to me recently, and I can't remember how they, they talked about the way astronauts solve problems. And I have to find it somewhere like because every I think the the, the example was that everything an astronaut deals with is trying to kill them. So you eliminate the things that are trying to kill you. And I think my brain works that way. So in my mind, I definitely want Josh's kid to be okay, health wise, and I want them to get in a good pattern. And, you know, raise the kids so that he's doing the best things for him. But I was sort of like in that spot where like, if Josh doesn't put on his oxygen mask, they none of this is gonna matter. Like that. That's sort of like how I saw it in the moment. But I'm grateful that you came along with the rest of the information. I wish it I wish I would have known in the moment, and I'm glad to know it. Now. I just think that aside of our conversation, you know, I also wear another hat where I oversee a really large Facebook group. And what I noticed most about when conversations go well versus when they go poorly. Usually when they go poorly, someone involved. I hope this doesn't sound pejorative. Seems like they want to be upset. You know what I mean? It's like, ooh, finally, someone said something wrong. I get to let out my vitriol right now. I can be venomous and angry. And and it's absolutely, I'm okay. Like, I'm justified doing this because they're wrong. In Yeah, you know what I mean? Like, you didn't have any of that.

Jen 1:14:13
Totally not what I was going for. Yeah. Right. So I don't think that's, you know, maybe people need an outlet. That's a good outlet for some people, but it's not, it's not a really great way to be heard or share information, you know, so

Scott Benner 1:14:26
they struggle for a walker mask, or something like that, instead of yelling at people online.

Jen 1:14:31
Oh, God, now my mom can't listen to that she

Scott Benner 1:14:32
can I'll blur you bleep it out. Just for your mom. No, I'm gonna bleep it out just for your mom. That is swear to God.

Jen 1:14:40
Don't worry, you have a cigarette. I'm 40 years old and never admitted to smoking a cigarette.

Scott Benner 1:14:46
So you're 40 and there's something inside of you. Right? And I was like, God, my mom's gonna hear that I had a cigarette.

Jen 1:14:51
Yeah, and she's upstairs watching my kids. What do you and I married?

Scott Benner 1:14:56
Again? What do you think your mom's done that you don't know about?

Jen 1:15:00
I don't want you to think about I think I know.

Scott Benner 1:15:04
At the end of the recording, will you tell me if I shut it off? No comment. I'll never meet your mom. It's safe tell me anyway you might need her would not be hilarious. If I met her. I was like, Oh my God, you're Jen's mom. And I got real read my face

Jen 1:15:20
your voice and should be like, Scott.

Scott Benner 1:15:23
Thank God, He knows what I did. Alright, well, I really genuinely appreciate you doing this and taking the time. Thank you very, very much.

Jen 1:15:31
Thank you. Thank you for having me. Oh, it's my pleasure.

Scott Benner 1:15:43
Obviously, first, I want to thank Jen for reaching out to me for coming on today for being so eloquent about celiac. And for telling her story. I'd also like to thank the Contour Next One blood glucose meter for being a sponsor of the Juicebox Podcast. And I'd also like to remind you to go to contour next one.com forward slash juicebox to check out that mighty little meter. That really is terrific. Thank you so much for listening. I can't tell you how much I appreciate it. There's a little more after the music, but then you can go on with your day

alright, real quick, looking for the diabetes pro tip episodes there diabetes pro tip calm Juicebox Podcast calm where they begin at episode 210. In your podcast player. Are you listening online right now? Please find a audio app and subscribe there. Are you listening in audio app but you aren't subscribed or following the show? Oh, you're breaking my little heart. Please subscribe and follow? Are you looking for that Facebook page? It's called Juicebox Podcast type one diabetes, a private Facebook group with over 23,000 people just like you talking about diabetes. Joshua's spoken about in this episode has been on the podcast twice once on episode 435. In an episode called Josh has all the fields and again in Episode 623. Josh has even more fields and that is the episode that was referenced today. If you're interested in going and checking it out. It's right there in your podcast player. I'll be back soon. Thank you so much for listening.

---

Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate