Scott Benner 2/19/21 Scott Benner 2/19/21

#443 Type 1 Clinical Trials

Type 1 diabetes clinical trials

Kim is here to share her daughter's story and a ton of information about type 1 diabetes clinical trials.

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 their favorite podcast app.

To find any clinical trial: clinicaltrials.gov or jdrf.org/impact/research/clinical-trials/

Teplizumab for newly diagnosed: theprotectstudy.com/home/
The functional cure trial company: viacyte.com
To get screened for auto antibodies: For relatives of a T1D 2-45 (free) trialnet.org and for anyone ($55) jdrf.org/t1d-resources/t1detect/

+ 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.

COMING SOON

#441 Doing the Sarah Dance

A family with multiple type 1s and celiac

Sarah's family has a number of autoimmune challenges including type 1 diabetes and celiac.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Friends, welcome. This is Episode 441 of the Juicebox Podcast. And today we're going to hear a tale, but not a tale of a tiny ship. It's a woman who married a man who got diabetes and they had a kid, and that kid got diabetes, and they got another kid and that kid might get diabetes, and most of them have celiac. In the 1950s. who done it? At this point, the music would go Dun, dun, dun. But all I have is this.

Today, as you listen to Sarah describe her life with Type One Diabetes. Well, her life yeah, I mean, she doesn't have it, but everybody else does. So alright. Today is you're here Sarah described life with Type One Diabetes from her perspective. Please remember 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 health care plan, or becoming bold with insulin. Do you have a great diabetes doctor endocrinologist, nurse practitioner CDE, someone you see that you love that you wish other people knew about? Or are you looking for someone like that, you should check out juice box docs.com. It's a list that's been compiled by listeners like you have great diabetes practitioners. It's absolutely free. Just go over there and peruse it. See if you see somebody in your area. Or if you have somebody you'd like to add to the list, use that same page to send me the information.

This episode of The Juicebox Podcast is sponsored today by the Dexcom gs six continuous glucose monitor by the Omnipod tubeless insulin pump. And of course, touched by type one, I'll be doing a virtual thing for touched by type one on February 26 2021. And there's still room so you can go to touched by type one org and then go up to their menu. And I think it's upcoming events. It's programs upcoming you'll figure it out. It's the internet, you know how to use it. Anyway, you can come absolutely for free. I'm going to give a little talk, answer a bunch of questions. It's going to be fun touched by type one.org. If you're looking for that Dexcom g six, head over to dexcom.com forward slash juicebox. You'll be able to find out all about art and CGM and how you can get started with it. And if you get your insurance, the United States Veterans Administration, I think you might like the answer you get back about what Dexcom costs. And of course, that on the pod tubeless insulin pump that Arden's been using since she was four years old, that's over 12 years now, you can get a free, no obligation demo today by going to my omnipod.com Ford slash juice box. There are links to the sponsors and all the sponsors of the podcast right there in the show notes of your podcast player, or at Juicebox podcast.com. If you're not listening in a podcast player, you should they're free, and they're terrific. And they're right there on your phone. And if you're listening in one and you haven't subscribed yet, please hit that subscribe button. Okay, you ready for Sarah?

Sarah 3:23
I'm Sarah. I'm the mom of two kids. Maya is 12. She has type one diabetes and has for almost two years now. I have a son named Finn, who's almost eight. And he also is looks to be headed toward type one diabetes, but is not yet. And then my husband Jeff also has type one. And then on top of the type one, all three of them have celiac also.

Scott Benner 3:54
Holy God. Okay, hold on. This is gonna take notes. Give me your daughter's name one more time.

Unknown Speaker 4:03
Maya,

Scott Benner 4:03
Maya, Maya is 12. Probably for two years. Finn is on his way. Everyone has celiac. including you.

Sarah 4:15
Not me. I'm the only one that doesn't. Wow.

Unknown Speaker 4:20
You got screwed, huh. Look at that

Sarah 4:22
time. Yeah, I'm the odd one out in the house.

Scott Benner 4:24
That's a nice way to think about it. I see. I said one thing and you had a much better reaction. I thought. You get the short end of the stick. You're stuck with all these people with celiac and you're just like, No, it's okay. I'm the odd one out. That's, yeah, that's interesting. So I am going to ask you a lot of questions, obviously. Okay. How long have you been married?

Sarah 4:45
We have been married for 17 years.

Scott Benner 4:49
He almost said too long.

Unknown Speaker 4:51
17.

Scott Benner 4:52
That's what he would say. Ah, I bet you he wouldn't say that where you could hear it. Did he have type one when you You met him?

Sarah 5:01
He did not well, bait and switch, bait and switch. So he probably did. Looking back on it. Oh, and we didn't know. So he was diagnosed when he was 27 I think, yeah, 27. But he had had symptoms of diabetes for a long time. And they just didn't get severe enough to really notice it. Understand until right before he was diagnosed, how long do

Scott Benner 5:33
you think is a long time?

Sarah 5:36
More than five years? Wow. Easily more than five years looking back? Was

Scott Benner 5:41
he ignoring something? Or was it just not harsh enough to force him there

Sarah 5:45
was, there was probably a little bit of that. And we didn't really know it at the time. But pretty much all of the men on his side of the family have been diagnosed as type twos, late in life, but they're all tall and skinny. And now looking at it, we think they're probably all actually type one. And it's just like a really slow onset.

Scott Benner 6:13
Any people left over that can check on that are these from past generations that are gone. So

Sarah 6:17
he's got I think he has one uncle that's still alive. That I think did eventually get diagnosed with type one. But yeah, like his grandfather was told he was type two, and there's no way he was type two. So we think it's just whatever type of type one runs in the family is like this really slow progressing. Then Maya was kind of the anomaly getting diagnosed as a child. Okay.

Scott Benner 6:51
Also being a female, right? Because the rest of our men,

Sarah 6:54
yeah, yeah. So she was the first female in the family. So then that kind of makes me wonder, I'm like, Well, I must have some genetics on my side, too, that might be contributing to that. So

Scott Benner 7:06
helping will say, Oh, yeah, that's all. Okay. All right, Jeff, diagnosed 27. Now, celiac, describe for me, how does it impact everyone the same way in the family? Or does everyone have a different experience with it?

Sarah 7:26
I would say the symptoms are similar, the severity in how they react is a little bit different. Like Jeff went through a long period of time where he traveled a lot for work. So he would always get we say, glutened, on his trips. And, you know, a lot of times it was just mild stomach issues, some joint pain. But like Maya, when she was younger, you know, she would react so strongly she would vomit. It was really, really awful.

Scott Benner 8:00
What kind of foods do that just for people to wrap their brain around? Like, throw a couple examples at me? Well,

Sarah 8:07
I mean, so really, it's like with celiac, you have to be on a really strict gluten free diet. eating out is usually where the gluten contamination tends to happen. So it's like even if we went to, like, Can I talk about a specific chain? That's really good. Hey, celiac.

Scott Benner 8:26
What do you think and I should have missed the sponsor, and you don't want to give it away for free. What was your thought there.

Sarah 8:32
So like, in and out burger is awesome. And they have a, they have like a dedicated griddle where they cook patties, and they don't cook any of the hamburger buns on that griddle. So it's like, even just that little bit of cross contamination is enough to make them sick.

Scott Benner 8:48
So when in and out says gluten free, they mean it and they come through. Yes. Whereas other people might say, hey, look, the ingredients are gluten free, but I did use the same griddle to warm your bond that I warm somebody else's bond on?

Sarah 9:00
Well, and now there's this really annoying trend at restaurants that's called gluten friendly, or gluten sensitive. And pretty much we see that and that means like, run the other way. find somewhere else to go.

Scott Benner 9:13
Really what gluten friendly or gluten sensitive. What could that possibly mean? Like we're

Sarah 9:18
kind of careful. It means I think we're gonna say like, we Yeah, we do our best. We don't intentionally add anything that contains gluten, but we're gonna cook your food in the same pan as everything else and all of that. So really, for somebody with celiac, that's pretty useless.

Scott Benner 9:37
Gotcha. Here we offer the gluten dice roll.

Unknown Speaker 9:41
Exactly. If you get lucky

Scott Benner 9:42
and the chef takes a big white towel out and really buff the pan out real good before he does your thing. You might be okay.

Sarah 9:48
Yeah, it is. It's like Russian roulette.

Scott Benner 9:50
That's hard to put on a song. Yeah, we

Sarah 9:52
Yeah, we don't we don't do that.

Scott Benner 9:55
Gluten friendly,

Sarah 9:57
gluten friendly, which is not friendly. When you have celiac? No kidding.

Scott Benner 10:01
I feel like I might be gluten friendly. Like, I don't mind it. And if it was a person, I'd probably say hi. That's that's pretty much what I'm getting out of that. Okay, so if he travels, that becomes more of an issue. If you really need to lock it down. What do you do in that situation? You bring things with you, what do you have to build time into shop when you arrive somewhere? And how do you prepare a hotel room,

Sarah 10:26
he will bring some stuff with him. But most of the travel was International. So it's kind of hard to bring a lot with you when you're traveling to Guatemala or Mexico or anything to declare Sinaloa going all over the place. So yeah, it was like he just bring a bunch of like, protein bars, and stuff like that. And when he had to live off of those he would. But really, the US tends to be where he would have the hardest time traveling and staying gluten free. You know, you go to a lot of other countries and like the food is what it says it is.

Scott Benner 11:06
It's obvious you can I was just talking to ya, my daughter's friend last night who made the assertion that subway made an amazing sandwich. And I said, I feel like you're wrong about that. Because I've heard that all of their meats are based on the same meat, which you know, and then she's like, well, I'm vegetarian. I don't eat the meat. And I was like, Yeah, but the rest of it even like, I mean, I don't notice a mixer back there. I mean, they always bake the bread in front of you, but I've never seen them make it maybe I'm wrong. Like, I have no idea. I'm just like, but anyway, that conversation led to an idea of you should be able to look at your finished food, and deconstruct it and end up with ingredients you can describe that are natural, like, that's good. You know what I mean? Like, that should be your goal. I said, I was like, you know, if you get a pizza made, you know what a chain, you know, it's possible that those crusts are pre made and frozen, which then puts preservatives in them and coloring and everything I say if you make a pizza at home, you can be pretty sure it's flour and water and salt and olive oil and tomatoes and cheese. You know, you can control those things. And she stared right through me and said, there's a man at my subway that makes such a good sandwich. I was like, okay, she's not listening to me. But anyway, that was the, the idea. Like you should be able to deconstruct. So you're saying in other countries, they're using more staple ingredients that are identifiable?

Sarah 12:33
Yeah. I mean, you go to Guatemala, and you order a steak and you know, it won't be doused in, you know, some kind of steak sauce or anything like that. It's literally just a grilled steak. Okay, well, billions or whatever. Right?

Scott Benner 12:48
Right. Okay. And now if he gets something by mistake, is there any stopping the train that's coming? Or do you just have to make your way through it? You just have to live through what happens next?

Sarah 12:59
Yeah, it pretty much you just have to kind of wait it out. You know, he used to take under these little like, what are they called? I think they're called gluten aid. They're a little enzyme pills that are supposed to help digest gluten. Like if if you accidentally get gluten. And he seems to think that those kind of shorten the duration you know, if he accidentally accidentally does get gluten but you pretty much just have to write it out since it's, you know, an autoimmune response. And there's not much you can do to really stop it. When you say write it out. You mean in a room that mostly has a tile floor? Not not that bad. Although it could be depending on the dose, like if you fall on ate like a piece of bread, it would probably be pretty ugly. But you know, with with just minor cross contamination, it's like, yeah, you might feel uncomfortable for a week or so. And, like for him that results in joint pain, like feels like arthritis.

Scott Benner 14:00
Jeez. And Sarah, between you and I as people who can eat gluten. How great is bread? Oh my God, oh, bread, wouldn't you?

Sarah 14:10
So I don't because I don't eat it often. Now when I do eat it. Like I don't feel right. So I'm like I think my body got so used to not eating it. But now I eat it. I'm like, Oh my gosh, what is this?

Scott Benner 14:23
Sir? Did you make your own friendly? Did I What did you make your body gluten unfriendly?

Sarah 14:29
I think I might have. Yeah, accidentally. I always joke that the only thing that I have in the house that contains gluten is beer. Because I feel like like they're in bottles. They won't touch anything like that's the one item that I haven't given up but yeah, pretty much everything else in the house is gluten free because with two kids like I don't want to worry about them going into the cupboard and grabbing something by accident.

Scott Benner 14:56
So you are de facto gluten free because three people Your family are as well. Yeah,

Sarah 15:00
for the most part. Gotcha. Yes, that may not not strict. But

Scott Benner 15:05
I hear what you're saying is has that made a health difference for you? Or if you can tolerate gluten, not having gluten really doesn't do anything?

Sarah 15:13
I yeah. I don't know that it really has made a difference for me. Yeah, I think because I don't have celiac, it doesn't really. I don't notice any difference.

Scott Benner 15:25
I asked. Because when I was figuring out that, I'm not sure if I've spoken about this or not. I've lost the timeline of when I said things at this point. But my body does not retain ferritin. It's a genetic thing that we're just starting to figure out. Right. But yeah, as the, you know, as I was digging through the myriad of possibilities that this could be, you know, one of the doctors says, eat gluten free for me for six months. And I was like, okay, so I did it. And nothing about my life got better. And I found that discouraging. I was like, I thought I would at least be taller or handsome, you know, like or just like lose 10 pounds, just because I made the effort because I really did. Like I was eating those. You know, like, if I bought bread, it was this gluten free bread. That was like $9 million dollars for like a hamburger roll. And so I was really strict with it. And then when once it was clear that gluten wasn't my issue. I was like, what a letdown. Like,

Unknown Speaker 16:20
yeah, you know,

Scott Benner 16:21
it didn't do anything for me at all.

Sarah 16:22
Yeah, yeah. And I think, yeah, I think sometimes some of those malabsorption issues that tends to be the go to is cut out gluten. But yeah, it's expensive. It's hard to stick

Scott Benner 16:38
to No kidding. It turned out what I needed was a rusty bag of water injected into my veins. So that there you go, is an oversimplification, right, I get something called injector for, and it genuinely does look like someone took a handful of rust and dissolved it into a bag of liquid and then just pumps it into you. And it is life changing.

Sarah 17:02
Do you feel right away? Do you feel the effects of that energy come back?

Scott Benner 17:07
No. So what has to happen is it has to get in and then your bone marrow has to pull it back in. So then in the process of oxygen sticking to cells correctly, blood cells correctly, that oxygenation happens. And then it happens. So what it feels like is that somebody slowly turns my dimmer up over about two weeks and then one day, okay, bulbs are just really bright. I don't notice that I got there. But it's it really is interesting. And we've now done some testing I haven't found out yet. But my son who is like a college athlete, and it looks like an underwear model get you know, like and he got his well visit done. And I just said to the doctor, I was like Adam Adams been on the show. I was like Adam, like, check his ferritin. And he's like, that's not gonna be a problem. And I was like, come on, just do it. Right. So he does it. And Cole's ferritin is super low like mine.

Sarah 18:02
Oh my gosh, yeah. So now just some genetic thing. Just lucky, I guess.

Scott Benner 18:07
Yeah. And so he's going to try and infusion next week. And if that helps them, actually, I think he's going to refer to a research scientist at Harvard who's working on this stuff, because it's incredibly uncommon to begin with, and even more uncommon for more than one person in a family to be dealing with it.

Unknown Speaker 18:25
So interesting.

Scott Benner 18:27
Yeah, so good. Good for us. Look, look forward to the the low iron podcast in 2025. I don't think that's gonna be a thing. But it really it really is crazy, because what happens next is that everything fundamentally about how I think and feel and how my body operates. gets better. Yeah, it's crazy.

Sarah 18:51
Yeah. That's, that's great that they figured it out. And Nice, nice for your son that he wasn't the first one. And then you're stressing that there's something really wrong. And

Scott Benner 19:00
yeah, that was important to me, Sarah, because I'm adopted. So if somebody went through this before me, I didn't know. And I just thought I'm going to fix By the way, it was nice you to say it was nice that they figured it out. But we figured it out without internet and finding research articles, because it's such an odd thing, that doctors just don't have a pathway in their brain to get to. Is it possible because my CBC My, my, my complete blood count count, I guess that's what that is, right? It looks perfect, with the exception of my ferritin.

Unknown Speaker 19:33
Okay,

Scott Benner 19:34
it almost looks like it's a mistake on the thing. And I'm not saying I'm super healthy, but my labs are all really good. And then this isn't, then you take it to a doctor and you know, then they go down the pathway of well, you probably have cancer, that's where it starts is your bleeding internally and you don't know it, obviously. And they're like, because you're not getting your period and I was like No, I do not get a period. I am just a stay at home dad. And so You know, that all happened. And then I went through that entire process. And then it got to the point where they were just sort of like, well, I guess this is how you are. And I was like, Oh, no, no, no, like, that's not happening to me. Because I get really, I can get kind of shaky when it gets low. Yeah, it's not on purpose. It's a really interesting thing that happens, where if I get involved in a disagreement with something, and it doesn't have to be like people like standing on either side of the room going red, blue, it's not like that. It's just like, if something happens, and it hits me, and I'm not able to prepare for it. When my when my ferritin is low like that, I start having responses out loud, that I don't feel in my heart or think in my head. Right, I come off like a real. And while it's happening, my brains going, why are you saying that? We don't think this, like, why is this happening? And I stopped myself. I'm like, I'm sorry. I don't feel this way. Like, I'll just and I have to, I can't stop myself. And I'll get foggy and dizzy when it gets really bad. And my muscles go to jelly. And I lose my ability to digest food. Well, like everything goes to hell. It's really crazy. So I have a lot of empathy for your kids and your husband and especially for stuff like this. And because it's bread and my god bread, so good.

Sarah 21:20
Yeah, that was that was hard at first, I think actually, we we always joke that we think what put him over the edge for his celiac diagnosis, because that came like think, two or three years before he got diagnosed with diabetes. But he had gotten me a breadmaker for Christmas one year. And so I was making bread, like every other day. And just the two of us were consuming an entire loaf of bread every other day. And then he started getting really sick. So I think it was the bread machine that actually

Scott Benner 21:56
like, like his, his, his celiac friendly belly was holding on by the by just by the skin of its teeth. And you were like I can fix this with nine loaves of bread a month.

Unknown Speaker 22:07
Exactly. Yeah, she's

Unknown Speaker 22:08
I mean, looking.

Sarah 22:08
He knew looking back on it. He had it as a child too. But nobody knew about it back then, like his mom had taken him to the doctor. And you know, it wasn't because she wasn't trying. It was just nobody knew what that was.

Scott Benner 22:22
Jeff was just the kid that after pizza disappeared for an hour.

Sarah 22:26
Yeah, you know, he didn't even have, he said he didn't have any of the digestive stuff. But like, his joints hurt all the time. And like, you know, he's I think six foot two now, but he was five foot two until he was 18 years old. And that's another one of the things that happens with celiac as kids like they just grow really late.

Scott Benner 22:47
Yeah. Is that something? Anything else? I don't mean to pile on. But anybody got a hypothyroidism or is there any other things going on there?

Sarah 22:56
So he has hypothyroidism and so this is mom. So we're kind of waiting for that. That one to drop on my Oh, we know that'll be coming. Yeah, I think that's it.

Scott Benner 23:10
You're in luck. Because, well, family Well, before this posts, I'm going to have an episode up with a really great doctor for hypothyroidism. And I have been looking for that person for my wife and daughter's entire life. And I found her this year. And I am she's going to come on the podcast and I am going to grill her because no one understands it well enough that, you know, a lot of people who treat people with hypothyroidism are just saying, Look, your labs are falling in a range or out of range. Here's a pill it's back in range. You're fine if anything else is wrong. It's not your hypothyroidism and that's not true. And I'm I found the lady. I found her. So awesome. Yeah, I'm excited about that. Okay. Nuts and Bolts in your day. What do you do to cook for people who have celiac? What are your meals look like in a week?

Sarah 24:02
You know, I don't even really think about it anymore. Because it's it's been such a part of our life. You don't really it's like most most basic foods that don't include obvious wheat or gluten free. You know, meat, rice, potatoes, fruit. You know, there are a lot of good gluten free products out there now. So Foster Farms makes these gluten free corn dogs that the kids are obsessed with. So that's been lunch a lot of days since we've been home. And I don't know if it gets easier once you've been shopping a while but I do remember the first few trips to the grocery store. After Jeff was diagnosed, it was like two hours reading labels and it was really not fun.

Scott Benner 24:51
Do you have a fundamental increase in your cost for food?

Sarah 24:55
Oh my gosh. Yes. How?

Scott Benner 24:57
How much do you think like what percentage Do you think your bill went up having to go shopping like this?

Sarah 25:04
I would bet. If I had to guess I'd say like 30%.

Scott Benner 25:10
Whoa, that's not okay. Yeah, that's it, your health insurance to cover that?

Sarah 25:16
Well, and and honestly, if it weren't, so if we weren't shopping for kids also, like, Jeff doesn't eat the frozen gluten free waffles and all that stuff. Like, we wouldn't be buying those things. But you know, when you have two kids, you want them to be able to eat as normally as possible and not have to feel like they're missing out.

Scott Benner 25:37
You don't want to suck all the joy out of their life. Yeah, but we're okay with Jeff not being happy. But the children should have some joy. I hear what you're saying. He just

Sarah 25:44
doesn't even care about that stuff. You know, that's not what he enjoys eating anyway. So we would eat a lot more simply, I think, Well, I

Scott Benner 25:52
think the good news is the two of us, then the good news is you do figure it out. The bad news is you figure it out, and it costs more money. And if you're working for people in your family, I mean, I'm not asking you what you pay a month, but that's, that's a fair amount of money. So it's a lot. Yeah. Oh, geez. This, this is a this isn't fun. It doesn't have any impact on diabetes care, insulin use, things like that.

Sarah 26:22
You know, the only thing we've ever noticed, is like if either Jeff or Maya, get glutened. You know, it can kind of mimic like if you have a stomach bug coming on, and your insulin needs go down for a few days. But other than that, we haven't really seen a big impact on diabetes management.

Scott Benner 26:45
I feel like you're trying to name this episode, get gluten. Get gluten. I don't know if it's gonna happen or

Unknown Speaker 26:51
don't don't get gluten.

Scott Benner 26:55
I think Sarah got gluten by these three people is what I'm saying

Sarah 26:59
that Yeah. Sarah got anti gluten or,

Scott Benner 27:03
hey, I have to ask you just quickly, you're on Instagram, right?

Unknown Speaker 27:06
Yes.

Scott Benner 27:07
So you realize that in my mind, you are that Instagram handle? Like that's your name?

Unknown Speaker 27:13
Ah, okay. That's what you were talking about at the

Unknown Speaker 27:15
beginning talking

Sarah 27:16
about because my name is in my Instagram handle. But

Scott Benner 27:21
okay, do you want people know what your Instagram is? Or? No, no, I don't. So it's Sarah joy dances, right?

Unknown Speaker 27:27
Yes, it is. What's

Scott Benner 27:29
the dancing about? Is that you dancing, trying to escape the grocery store without paying? Or, you know,

Unknown Speaker 27:34
you would you would think that lady's running off with fake bread?

Sarah 27:41
No, so I grew up dancing. And up until just a couple years ago was doing adult ballet classes. So I just loved dancing. So that's my Instagram handle.

Scott Benner 27:53
But you just need to understand and this is meaningless in your life. But in my life, your Sara joy dances, there's no right like I if you paid me to know your last name would never happen, even though we've emailed a number of times. And I've seen it I just It doesn't matter. It pops up in my head like that over and over again. It's just very, it's very interesting how social media does that. Like I could? Yeah,

Sarah 28:16
it does. Yeah, yeah. You totally attach those names to people.

Scott Benner 28:21
I just think that when people say like, oh, the guy on the podcast said, I think that's reasonable. Because functionally I am the guy on the podcast guy. Yeah, I feel like they know my name and they don't care. And I feel similarly about when I meet people in odd ways. So anyway, that's all I had to say that out loud because there's something about the the I like the bounce of the words. Now, if that makes sense or not, there's a pantalla. Sarah joy dances that makes me happy when I read that. So okay, I don't know if he did it on purpose at

Sarah 28:52
it. I did not. I just, I think I chose it because I enjoy dancing. But I'm glad that it rolls off the tongue. Well,

Scott Benner 29:01
it also makes me feel like you're happy even though I'm just assuming it's your maiden name.

Unknown Speaker 29:07
Though. What's my maiden name?

Scott Benner 29:09
is Joey your maiden name?

Unknown Speaker 29:10
It's my middle name.

Scott Benner 29:11
your middle name? Got it? Yes. Okay. Okay. Yep. So you always seem happy to me? Because my brain is really simple.

Sarah 29:21
I don't know. Yeah. Maybe less so over the last five months of being stuck at home. But yeah,

Scott Benner 29:28
just telling your story in my mind. You're that little girl from the peanuts who just is dancing and dancing and dancing and dancing. I'm sure your life has nothing like

Unknown Speaker 29:36
I'm not No, I would say I'm not quite there. Do you

Scott Benner 29:39
find that now? We should figure out which girl in the peanuts is the dancing girl or whatever. You know what I mean, though, right? Yeah.

Unknown Speaker 29:51
Yes. Yeah.

Scott Benner 29:54
Tell me a little bit about Don't worry about it. I'll google it for you. Tell me tell me a little bit about About your daughter's diagnosis, please.

Sarah 30:03
So she has a really interesting story. And I think this is kind of why I had contacted you, you know, with interest in coming on, because she was a super early diagnosis. And I found when she was diagnosed, I couldn't find anyone that was in our situation. So Maya, let's see, she was diagnosed in August of 2018. So we're coming up on two years. And the only thing that clued us in that there was something going on is we had gone to our state fair, we live in California, and the kids right before we left, they wanted to get a treat. And so they got one of those, like dole whip, like that frozen yogurt kind of stuff made with pineapple. And so they each had, you know, this big dole whip. And then on the drive home, I kept saying, she felt really weird. Strange, you know, and, you know, the whole way home, she kept saying, I feel really strange, something's wrong. And so we got home. And it wasn't like, we were regularly checking her blood sugar normally, like, because we hadn't seen any signs of diabetes really ever. And so we pulled out Jeff's meter and like, let's just check your blood sugar because he did just eat, you know, a lot more sugar than you normally one sitting. And I think it was like 225 or something. So it was it was high wasn't considering what she ate. You know, she ate something like that. Now with no insulin, it would be

Scott Benner 31:50
I was gonna say faster. your perspective? No, yeah.

Sarah 31:53
Yeah. Yeah. But it was like, Okay, I knew that wasn't right. So. So I think we, we got her in, I think first to see a pediatrician. And they happen. They checked her a one C and that came back and it was 5.4.

Scott Benner 32:12
So we just caught it at the beginning, then.

Sarah 32:14
Yes. So but because we had, you know, the incident after the state fair, we kind of kept checking her blood sugar, especially after eating Carvey meals and it was regularly getting over 200. So we're like, Okay, this isn't right. So I think at that point, we asked for them to check her antibodies, and those were positive. So then we were able to get her in to see an endocrinologist. But yeah, it was like, the strangest experience because really, her diagnosis just consisted of a normal office endocrinology visit. We went in on a I think it was a Friday afternoon. Because our family, our tradition is on Friday evenings, we do pizza, and we eat dinner on the living room floor and watch a movie. And so I remember it was Friday because it was pizza night. And they literally just sent us home. They're like, here's your prescription for some insulin. We want her to take, you know, this really small amount. I think they started her on like a it was like a one to 50 carb ratio. And no basil. At first. She took no long acting, acting for probably two months. Yeah, and we just we went home and picked up the insulin at the drugstore. And did you get that? Is it on the floor? Yeah.

Scott Benner 33:44
Question about that. This is very important to me. It's gonna seem like a sidebar to you but hardwood or carpet.

Sarah 33:51
So we have hardwood but there's a big rug down.

Unknown Speaker 33:53
Okay, pets. Yes, dog.

Sarah 33:58
So we have one dog now, but at the time we had Well, we still just had one dog at that time, but it was different talk.

Scott Benner 34:07
Would you like a bizarre look into my mind? I would love to sit on a rug. But when I own a dog, I can't bring myself to do it. There you go. That's it right there. That's that's the entire ball of wax. I just I'm like, I don't know there's hair down here. I don't want to be a part of it.

Sarah 34:24
So I do have to say, and this is gonna sound kind of gross.

Scott Benner 34:29
Finally say something gross. Okay,

Sarah 34:32
so the rug, the rug that's in front of the TV. That's like, that's the good rug. We have another rug that's like out closer to where our sliding doors in the backyard are. And when things happen with the dogs, it tends to be the other rug.

Scott Benner 34:48
There's a good there's a fitness and there's a dog get over there. Snoopy rug.

Sarah 34:54
Yeah, there's like the rug that the dogs gravitate toward when something's wrong. And then the one They they leave alone. Gotcha.

Scott Benner 35:01
I'm gonna ask you in a minute about the differences between Maya and your husband's management. But before I do, I'm going to show you the very strange thing that I learned about the peanuts while I was online. So I found an article called like, it's something about like, the peanuts characters you don't know are the names you forgotten. And I see that the two little girls at the play who are dancing, who were the ones I was thinking of, are twins. And I was like, Ah, that's odd. And then I noticed this 55595472 it says one of the most bizarre characters in the peanuts universe was 55595472, or five for short, introduced in September 1963. Five explained that his father was so upset about being seen as just a number, he renamed the entire family as a series of digits. This is probably from the comic strip, right. The last name is taken from their zip code, though when spoken, five insists there's an accent on the for the zip code, by the way, is actually the real one for Sebastopol, California, where Charles Schulz lived at the time. five sisters three and four made a few appearances in the strip before disappearing, but five was occasionally a background character until 1981. You've probably seen three, four and five already and didn't even know it. All three appear in the famous dance sequence in a in a Charlie Brown Christmas, which is where I know them from. And the four Okay, three and four are the twin girls in purple dresses. So, anyway,

Sarah 36:45
that will be the most random thing I learned all day.

Scott Benner 36:48
I think that that's the strangest thing I've ever said on this podcast, too. And anyway, I and most people have been like, what are the peanuts? But Snoopy?

Unknown Speaker 36:59
I'm old enough to know the peanuts. Yeah,

Scott Benner 37:00
Lucky you. celiac and old.

Sarah 37:04
Right? Yeah, I tried turned 40 this year, when I'm proud of it. I'm happy with it. So let

Scott Benner 37:09
me tell you what I told my son the other day when I turned 49. I said there are two options. Turn 49 or die. I was like, Oh, yeah, I'm gonna go with 49 It sounds okay. Right.

Sarah 37:20
Not everyone gets to reach that age. So flip

Scott Benner 37:22
it upside down means I'm still going. Not that 49 is old by any point. But you know, know, when your kids 20 they look at you like you're 1000 when they say you're 49. So yeah, a lot of fun. Alright, so we've learned something about the peanuts. We've learned a lot about celiac. And now And now I'd really like to know. Is there are there multiple management styles in the house? Does your husband do it one way your daughter does another way are we all on the same page, MDI pumps, glucose monitors etc. pumps, glucose monitors and etc. My my I have that here. Let's start with the etc. It's easy, touched by type one.org. Check them out at that address or on Facebook or Instagram. And don't forget I'm doing a little thing for him on February 26 2021. I'd love to see you there. Now pumps. Arden has been using the Omni pod tubeless insulin pump since she was four years old. At that point, she had had diabetes for about two years, and she was getting ready to go to kindergarten, my wife and I decided that we didn't want her to go using syringes. So we did our due diligence, we looked hard at all the other pumps that were available. And at that point on the pod seemed like the clear choice to us. In no time we knew we made the right decision. And now even in hindsight, I can say I'm glad we chose the Omni pod. As a matter of fact, if I had to make the decision all over again today, I would do the exact same thing. Omni pod has come a long way in 12 years. And I'm pretty excited about where it's headed in the future. So listen, how you going to take my word for it right? This is an advertisement. Somebody's paying me to say this. Well, you could find out for yourself. You can go to my omnipod.com forward slash juicebox and Omnipod will send you a free, no obligation demo. It's a non functioning pod that you can wear and see what you think for yourself. Right? You put it on your shower. Oh yeah, you can shower with your pump on if you have an omni pod. You can go swimming. see other things you can do with other insulin pumps swimming. You also might have a hard time with other insulin pumps walking past the doorknob without getting your tubing caught on it and ripping out your infusion set. That won't happen with the Omni pod because the Omni pod is tubeless but you don't need me to sell it to you you need to see it my Omni pod.com forward slash juice box links in the show notes. Links at Juicebox Podcast comm give it a try and see what you think. Would you love a continuous glucose monitor? You don't know where to begin? For me? I'd begin@dexcom.com forward slash juicebox Arden has been wearing some version of the Dexcom for Evers forever. I don't know how to get But she's worn oh my gosh, the G six which she has now she's one of the G five version before the g4 the version before that there was a seven plus before that not sure how they went from seven to four to five to six. But that's nothing to really talk about right now. The point is, Arden has been wearing the Dexcom for four generations of the product, and it just keeps exceeding expectations over and over again. dexcom.com forward slash juicebox check it out for yourself, right. That's what this is all about. I'm going to tell you about it. You go take a look. Don't take my word for it. See what you think. But what I can tell you for sure about Dexcom is this. I can see Arden's blood sugar on my phone. I am not holding my phone right now I've picked it up. I've swiped up, I've put on this Arden's blood sugar is 102. As a matter of fact, I can see that for the last 12 hours, Arden's blood sugar has been between 80 and 102. Right now, it's pretty amazing, isn't it? I see that on an app on my iPhone, I could also see that on an app on an Android if I had one. As a matter of fact, up to 10, people can see that if you want, like a school nurse, or your mother, or somebody to help anybody you want to have involved in your care. I know what you're thinking, that's a pretty good number, right 80 to one though, it is. We do that by using the data that comes from Dexcom to make Bolus decisions that we make through the Omnipod. Sometimes their Temp Basal increases or decreases or extended Bolus is depending on the meals. It really, you know, there's so much that we learned from the data, it just makes dialing those settings, getting them right. So, I mean, I just find it to be so much more easy. So much more easy, easier. Have a made up a word. So you didn't have to say so much more easy. That makes a lot of sense. Listen, our results are ours and yours may vary. But I know one thing for sure, having great tools and knowing how to use insulin is the basis for success with Type One Diabetes. Get yourself a free no obligation demo of the Omni pod today at my omnipod.com forward slash juicebox. And learn more about the Dexcom and get started@dexcom.com forward slash juicebox. And of course, don't forget touched by type one.org. Back to Sarah, Sarah, Sarah. I'm having trouble talking.

Sarah 42:19
So my husband has always been MDI and he does really well with it doesn't have a lot of incentive to change. He likes the simplicity of it. And with Maya, we got her on an omni pod, I think about two months after she was diagnosed, maybe three. And really early on, it was kind of out of necessity. We found it was really hard. Because she has always been in this honeymoon phase, you know, it was really hard managing on just these half unit increments that we could do with the pens. So pretty much right away, we were talking to the endo about getting her on a pump and listening to this podcast. And you know, just all of the contacts that I have with people on Instagram, I realize how lucky we are with her endocrinology practice. They've been super supportive of pretty much anything we wanted to try. And they didn't pull the whole like, Oh, you need to be MDI for six months or any of that or, you know, hear people talk about the endo not wanting to put them on a pump until they're using a certain amount of insulin per day. We didn't encounter any of that.

Scott Benner 43:46
You just they just were helpful and understood. Yeah, we're in the Yeah, we're in the country. Do you live?

Sarah 43:52
So we live near Sacramento? Okay. We're kind of right in the middle of California. The hospital that we go through, you know, so Research Hospital. So I think the mentality is a little bit different.

Unknown Speaker 44:10
very progressive, and yeah,

Sarah 44:13
a lot more a lot more progressive. Because even now, when I, when I think about them sending us home with insulin, you know, when she was needing so little, like, I kind of freaked out. And in my mind, I'm like, Oh my gosh, like, I can't believe they just sent us home. But But you know, that's what she needed. And you made it work.

Scott Benner 44:35
Do you think some of that is just because your husband had type one and they were just thinking like, well, they must know what to do.

Sarah 44:40
I do wonder that? Yeah, I I suspect that that probably had something to do with it. I think if we hadn't had that background. You know, because Maya wasn't in bad shape physically. I don't think that they would have I don't think they would have admitted her to the hospital. But could see, you know, having had a much more in depth visit,

Scott Benner 45:04
but they might just feel comfortable about it.

Sarah 45:07
Yeah, it could be.

Scott Benner 45:08
Yeah. And so if they had that assumption, was that a fair assumption is your husband's like, like, how does he manage? Does he make out? Well?

Sarah 45:19
Yeah, he he does awesome. Actually, it's kind of funny because he and my daughter will like compare their clarity reports. And I think his agency might be sitting just a little bit lower than hers right now. But I won't show her that because she'll get competitive. Oh, that's interesting. But yeah, he does he he manages to stay under six on MDI.

Scott Benner 45:44
That's excellent. Yeah, does he and it sounds like they're looking at clarity. So they're paying attention to to time and range and yeah, all that stuff. That's excellent. Yep. So it's, it's a healthy competition, then. Do you think

Sarah 46:00
it is? Yeah. No, they don't get too weird about it. But

Scott Benner 46:05
nobody, nobody flips out? No, no. They don't they don't fight the 50 yard line or anything like that.

Sarah 46:13
Nobody peels off somebody Omni pod or, you know, like, I'm

Scott Benner 46:16
ahead of you now. Your blood sugar's gonna go up, I'm gonna win. That probably wouldn't be okay. Or healthy. But I think it's so they have this in common. Do you notice a bond with them? That's that wasn't there before? Or is it stronger now?

Sarah 46:31
I do. Yeah, I do. And I think that's made a really big difference in Maya's ability to cope with it is knowing that she's not the only one in the house. I think that's been huge.

Scott Benner 46:47
I think I'd have to agree that that that seems like a bonus, honestly.

Sarah 46:51
Now, actually, I think if I talk about it too much, I'll start crying. But yeah, just having, you know,

Scott Benner 46:58
I could use some tears. It's good for the podcast.

Sarah 47:01
He's, he's a good role model. He's good. He's, he's shown her, you know, that it's important to pay attention and care what your blood sugar is. And you know, not that you have to deprive yourselves of things. But, you know, every once in a while, there are going to be circumstances where it's like, oh, I really wanted to eat ice cream right now. But I should really Wait. Let my insulin kick in. Right? That kind of thing.

Scott Benner 47:27
While you were talking just now I devised an incredibly mean way to make you cry. And I'm not going to do it. I just want you to, but I could, if I wanted to. I was gonna start with terrible strife in the world, go to global warming. Ask if you ever think there's going to be an end to this COVID-19 pandemic? There's a lot right now. Yeah. And then I was just gonna ask you again about the connection between your daughter and your husband and then listen to your cry. And

Unknown Speaker 47:50
right now would be a good way to do it. I don't

Scott Benner 47:53
need you to cry. And that's a beautiful thing. I wonder this? Because you said and then need to dig into this a little bit to ask the question. But you said you think fins on his way did you have his antibodies tested.

Sarah 48:05
So the interesting thing with him, he is antibody negative right now,

Unknown Speaker 48:11
okay.

Sarah 48:12
However, he goes through phases, and they seem to come and go, where he has blood sugar regulation issues. So our endo pretty much thinks. So I was always under the impression that usually the antibodies preceded the blood sugar management issues. But I guess it can actually go the other way around. Also, where sometimes people will actually have trouble regulating their blood sugar before the antibodies show up. So that's essentially what our endo thinks is probably happening. For him, we just kind of have to keep an eye out. So we get as a one c checked a couple times a year. And they antibodies. So right now, it's like he's been sitting at about a 5.6 5.7 a one C. So it's like, just bordering on that pre diabetes range.

Scott Benner 49:16
How I have a question here, and I don't know how to form it. How does it present low blood sugars or high blood sugars? And does he feel like

Sarah 49:24
high blood sugars? Yeah, and he'll feel it he'll actually says he feels shaky. Which is kind of funny. But yeah, like there have been a number of times where he's like, yeah, I feel funny, and we check his blood sugar and it can easily be, you know, 180 he's had times where he he will hit 200. So when he's going through one of those phases, we just kind of have to watch the carb intake.

Scott Benner 49:53
How long do they last the the phases?

Sarah 49:57
You know, it seems like it's been like in Two or three month little stints that seem to happen. Like he'll go through a phase where we have to really watch his diet. And then we'll go through a phase where it's like, nothing's wrong.

Scott Benner 50:10
It took me by surprise there. I didn't think you'd say that long. That's interesting. Yeah, Fox, I'm sorry. Huh? Will he wear a glucose monitor? When it happens?

Sarah 50:24
Yeah. So we actually, when this first started happening, or when we first caught on to it, we had hoped to get approval, even just for short term to just throw a Dexcom on him and see what was going on. But without a type one diagnosis. The insurance companies won't cover it. So

Unknown Speaker 50:46
that was nice.

Sarah 50:48
Yeah, which is fine. I mean, he doesn't seem to mind the finger sticks. Actually. He's, he's funny. It's like, he's very much an engineering kind of mindset. And he likes data. So he actually like he enjoys pricking his finger and seeing the number and like, oh, what does that mean? You know, how old is he? Again? He's, he turns eight on Saturday. So we're two days away from his eighth birthday.

Scott Benner 51:14
Well, congratulations, and Happy birthday.

Unknown Speaker 51:17
Thank you,

Scott Benner 51:18
the acceptance part. Does he think he's getting diabetes at some point?

Sarah 51:23
He does. It's been kind of kind of tricky to talk to him about it. You know, because we don't even know what's going on. And so you know, we just kind of have to say, it looks like you might have diabetes. Like, like dad and Maya someday. And you know, he, he seems generally okay with it. Sometimes less than others, but

Scott Benner 51:49
yeah, I don't see where I would be okay with it.

Sarah 51:52
Yeah, it's, it's tough.

Scott Benner 51:54
Yeah. Or any bad news that crystal balls me when they were like, oh, guess what, when you're 35 hairs gonna fall out? Don't worry, you know, is that good that? You know? I don't think so. Thank you. So that's it. Yeah.

Sarah 52:07
But then again, it's like, you look at our household. And, you know, the three of them have celiac. So if the three of them have diabetes, it's like, you've got good company.

Scott Benner 52:18
Well, you should at least have a clan of people there who understand how to support each other in that.

Unknown Speaker 52:23
Exactly. Exactly. Well,

Scott Benner 52:26
yeah. Probably going to be probably going to be really interesting. I'm going to need to keep this podcast going another 10 years, at least I'd like that Finn on when he's getting ready to go to college. Yeah, that's my new goal. By the way, 10 years to get fit on right before college. I want to hear this.

Sarah 52:43
Oh, yeah, I'm like, I if we can delay it as long as possible. I'm happy with that.

Scott Benner 52:48
I would like to get him back on and have them go, you know, I never got diabetes. I just think

Sarah 52:54
that would be fantastic. Yeah,

Scott Benner 52:55
that'd be pretty cool. But that's, that's super interesting. So I think I think as we enter into the last quarter of the hour, after hearing all this, I got to understand if you're okay, and what you're doing for yourself.

Unknown Speaker 53:12
Um, yeah, I mean, I think

Scott Benner 53:15
smoking weed or something like what are you doing exactly, to relax?

Sarah 53:21
So funny that you mentioned that. Not that that's what I'm doing to cope. But my my husband, Jeff, he's actually a commercial hemp breeder. So he works on he develops high CBD, varieties of hemp. And he also works on lettuce and a little bit on raspberries. So yeah, he's a plant breeder, so.

Scott Benner 53:46
So let us raspberries and hemp.

Sarah 53:48
Yes. And he comes home smelling like hemp.

Scott Benner 53:51
So you got to slow down your what you said gives me questions. What do you go to college for to be able to do that?

Sarah 53:58
So he studied plant breeding. So for many years, he worked on melon. And then he, he loves to work at a small company where he now works on multiple crops, and his cluding

Scott Benner 54:14
family. Bunch of hippies like how do you like it? I'm trying to think about how much I send to college and it's cold told me I'm going to really dive deep on plant breeding. I'd be like, that doesn't sound like you're getting my money back. But it seems like first of all just doing really well. And it's just something that I don't understand. But

Sarah 54:32
yeah, it's just it's a super cool job. So ya know, his family. They're definitely not a bunch of hippies. Actually, it's, it's, it's kind of funny. He kind of like, Yeah, he doesn't talk a ton about his new job with his mom, but

Scott Benner 54:53
she doesn't like the hem part.

Sarah 54:56
I think she's I think she's getting comfortable with it.

Scott Benner 54:58
Let's give her some romaine. She'll be out Oh, yeah,

Sarah 55:01
no, the Romans fantastic. Here's the question. Do you guys have a garden at your house? We we do?

Scott Benner 55:08
Is it ultimate? Like, is it just the ultimate most successful home garden in the world? Or

Sarah 55:14
it's a pretty good home garden. And I'm not responsible for any of it. I I do not do well with keeping plants alive. So

Scott Benner 55:24
you're just eating the lettuce and I'm making quotes around the lettuce, because I'm assuming it's the wheat. But you know, just

Sarah 55:30
actually, it's mostly tomatoes and eggplant. Yeah. So do you live in California?

Unknown Speaker 55:37
Do you use CBD yourself?

Sarah 55:40
I have, um, I don't know that I've really noticed much of an effect. I know it's supposed to be good for certain things and have anti inflammatory properties. But yeah, I don't know that I've ever really noticed a big effect.

Scott Benner 56:00
You don't have to keep going. I want your husband to have a job. I'm just I'm trying to understand everything here. Because I've tried it in the past. And I thought to myself, I don't notice anything happening here. But I know people who run around yelling about it constantly.

Sarah 56:12
Yeah, no, I know, people that swear by it. And even a lot of people who I would think would not touch anything related to that plant that are are huge proponents of it.

Scott Benner 56:22
It's helpful for them. Yeah. Listen, whatever works is the answer. It's just interesting that your husband had joint pain. And he works with CBD. And I thought,

Unknown Speaker 56:30
right, right.

Scott Benner 56:32
Calling was he like, oh, finally I can help myself a little bit. That's really an interesting. Oh, can I get him here? Because my wife bugs me about a garden a lot. And I don't do it for it. And I feel like I would mess it up. And it seems like a lot of work to if I'm being perfectly honest.

Sarah 56:49
It is a lot of work. Yeah, he spends a lot of time out there. But yeah, we're all thankful for it when we have fruit and vegetables to pick, I would imagine. And you're

Scott Benner 56:59
in a good part of the country to do it, too.

Sarah 57:01
We are Yeah, yeah. You didn't grow just about anything here.

Scott Benner 57:06
I'm in the month in New Jersey, that if you walk outside, it just feels like someone like spritzed you with a hose. You're like, Oh, good. I'm wet. It's wonderful.

Sarah 57:16
Yeah, we, we don't have that humidity here. It's hot. But we don't have the humidity cold had

Scott Benner 57:22
a game the other night. And it went forever. It ended like 1115. It didn't start till like eight. And the humidity never broke. It was just like 89% humidity the entire time we were standing out there. The kids were soaked and it was unpleasant. And it was like I got home. My wife's like, hey, do you on like shower, getting a shower? Please? Don't getting a shower. Talk to you afterwards. You know? It's terrible. Yeah, I really want to go somewhere with low humidity. And not too much snow. That's where I would like to live out my days. If I can find that.

Sarah 57:57
Yeah, most of California fits that.

Scott Benner 58:01
Yeah, I want to be able to afford it too. So yeah, there's that I feel like I need I feel like I need a Montana house. For the certain times of year, I would like some open space. And then I need to run somewhere else in the winter where it won't snow. But right that again? Sounds like I'd have to have a lot of money. So that's probably not, you know, less you guys listen to the podcast more. That'd be nice. You want me not to be moist in the summer, you could just tell more people about the podcast and help me

Unknown Speaker 58:30
exactly.

Scott Benner 58:31
I'll tell you everything. It was that easy to get to that I I don't know what I would do. But that doesn't seem like it's that easy. But no, seriously, so we never really got to how you chill out like, what do you do?

Sarah 58:46
What do I do? I exercise a lot. I think that's been one of the one of the upsides of working from home and having kind of a, a different schedule that's not quite as rigid as when we were having to get everybody out of the house is I can throw on my headphones and go for a long run. You know, it's like all the gyms are closed right now. But the one I belong to does outdoor classes right now. And that's kind of my thing.

Scott Benner 59:22
If you didn't have that, and I am probably gonna, at some point make you cry here. But if you didn't have that, would you think you'd be overwhelmed with the idea of this isn't fair, or, I mean, how does it really hit you viscerally?

Sarah 59:38
I don't know. I mean, thinking about it. It's like if I were to write everything on paper, that that we deal with. It might look like a lot, but I think a lot of people deal with a lot more than we do.

So I guess I've just never seen it that way. And I think it's all kind of come on one piece at a time, too.

Unknown Speaker 1:00:00
But

Sarah 1:00:01
yeah, it's like we didn't get hit with everything all in, you know, within one year or something like that. So yeah, I don't know. I just I'm sorry. Okay. It's just, it's our life. And I guess I just haven't, haven't seen it. So I guess we have our challenges that we deal with. But then I see my friends and they have their own challenges that don't pertain to diabetes or celiac, it's like, they have totally different things going on that are equally as challenging.

Scott Benner 1:00:32
Yeah. No, I don't mean. So I think there's a couple of interesting thoughts in there. One is the idea of like, other people have it worse. But I don't think other people's bad stuff makes your bad stuff. Not hard. Yeah, no. But so do you use that? Is that sort of a? Is that sort of a crutch? like to say, look, other people have it worse. So I'm not going to let myself feel bad about this? Or is that a real kind of just life motto? Like keep going things are okay. Do you think

Unknown Speaker 1:01:04
it could be kind of a defense mechanism?

Scott Benner 1:01:10
Six months, like, Sarah was in a home, she she couldn't handle it anymore.

Sarah 1:01:16
I often say I'm like, Okay, if, if we ended up with a third kid, that would be what would put me into the loony bin right now. But no, I think, I don't know. And I think just so I'm, I'm a scientist. And I think I'm just very, like, I see things kind of in a practical way. And so I see, you know, I see diabetes, and it's like, Okay, what can we do to make this easier? Let's do that. And that's just kind of my approach to things. So I think that that helps kind of take some of the emotional component out of it.

Scott Benner 1:01:56
That's excellent. I mean, it's a lot going on whether like, it's like you said, writing it down might look worse than living it. But it's still, it's still a lot. There's time that's lost. There's energy that's lost. And all this stuff impacts other parts of life. And, you know, I've done it, and I'm sure other people have done it, too. You sit back, and it's almost like paying your taxes, right? You're like, what would I have done with that extra money? Like, what would I do with that extra time or, and now you're not having to worry about things like, I'm wondering what I'd be in that space, I'd probably just be watching television, but I like to imagine that I'd be doing something amazing.

Sarah 1:02:31
You spent I mean, your brain gets so good at dealing with diabetes at the same time as everything else in life that you just don't realize how much time? Yeah, you're devoting to it because it becomes second nature. But you know, all day long, I'm glancing down at the Dexcom app or nightscout. And, you know, even if I'm not having to do anything, to intervene, it's like, it's just always there.

Scott Benner 1:02:59
How involved are you with Jeff? Not? I mean, from your description of how he manages, I would think he's not looking for help. But I'm wondering,

Sarah 1:03:06
not at all I mean, I have him, like I have him on Dexcom follow. But he just, he just takes care of it. And I think it was kind of funny, when Maya got diagnosed, I thought like, Okay, I know a little bit about diabetes because of Jeff. But he doesn't talk about it a lot. And so I think I didn't realize, like, I knew nothing about the nuts and bolts. And so I thought I knew more than I did. And, you know, it's like, it only took a couple days to realize that, like, Oh, my gosh,

Scott Benner 1:03:46
well, you know, an episode went up today with a woman who said the exact same thing about her husband. Okay, yeah, just the exact same thing. And then her child was diagnosed, and then it made it more of a thing that was spoken about in the house. But

Sarah 1:04:00
yeah, yeah, I mean, he just he's always just dealt with it. You know, it's like if he has to take three or four injections to correct a high blood sugar, he just does it. You know, he doesn't doesn't whine about it.

Scott Benner 1:04:15
Does it ever impact his mood? And is it hard to remember for you when it does?

Sarah 1:04:22
I think the only times I really noticed it is if he's low. Like he'll he'll get a little chippy.

Scott Benner 1:04:32
Can he can he hear your loving, wifely direction when you're telling him that when he's lower? Can he not respond? Well, it's usually best

Sarah 1:04:43
just to not say anything. Okay. No, he doesn't go like you know, it's not like one of those

Scott Benner 1:04:51
slowly I tell our stories of people

Sarah 1:04:53
yeah, people that like totally turn into a different person and no, it's not anything like that, but

Scott Benner 1:04:59
you don't bring up some or vacation plans are no, no, no, definitely

Sarah 1:05:02
don't bring up anything that's touchy.

Scott Benner 1:05:05
Yeah, that's interesting. I mean, I just again, it's something that you have to consider that I don't think that most people would. would believe. It's almost like when you have kids, and you're like, you need to say something to them you think and you know what they're upset right now. Now's not the time, or they just got home from school, or I'll let them eat something first. You know, it's, it's just another one of those things, to me at least like you just don't, you know, and life doesn't always like do that. Like, sometimes you can walk into a room thinking, you know, we need to buy a new washer and dryer. And I need to say that out loud so that we can get this process going. And Yep, not everybody has to look up and think. I wonder what Jeff's blood sugar is, before I bring it up buying a thing that no one in the world wants to buy, get you exactly

Unknown Speaker 1:05:47
the stuff.

Scott Benner 1:05:49
It's, I just find it really interesting. And I think more so because of the iron thing, because now I have this appreciation for the fact that my personality changes, but my iron gets too low. And then right. I didn't know that. And and I'm grateful for the knowledge because otherwise. I mean, imagine if this was 200 years ago, I would just be the, you know, the guy who gets mad for no reason and sleeps more than he should? You know, and then that's my story forever. Right? Who I Am.

Sarah 1:06:17
Yeah, it's unfortunate that you had to do all the research yourself. No,

Scott Benner 1:06:21
internet wasn't that tough by research? I mean, I sat in this chair and googled things. So I found out what to do. But I also you think about people who wouldn't think to do that? Or would come up and get into the first answer that they get? And if they I guess maybe I have diabetes to thank for that a little bit, honestly, that I didn't. The first thing they said, you know,

Sarah 1:06:41
well, yeah, I mean, I just, I think about that every day, you know, people, people that I meet that have diabetes that are having a tough time, you know, because they go with what the endocrinologist says, it doesn't have to be that way.

Scott Benner 1:06:57
Yeah, no, you can keep looking and learn more things. And I mean, the podcast is a good example of that. Really? Yeah. I didn't ask you at all. But do you like this podcast? Like, why are you on it?

Sarah 1:07:10
Yes, yeah. No, I, we definitely listen. This was like, I think, probably what helped me the most in getting off the ground with helping my good because it's like, I just I knew nothing about, you know, the nuts and bolts of managing diabetes. And all we had was the information that we left the endocrinology office with, which is pretty much that standard, like, use this much insulin, treat a low with 15 grams of carbs, that kind of thing. Which I don't I in no way want to be little, the office that we go to? Because they are fantastic. And I know why. I know why they probably only give you that much that first day. But But yeah, it it's the problem is when

Scott Benner 1:08:03
the first day turns into the six months, and then you're much more than that. And yeah, you've only seen them for 30 minutes, and so far, and you're trying to figure things out, and things are happening every hour and every minute. It. It's not like, it's just a strange thing to say to somebody like, you know, I'll see you in 90 days. And like, well, I'm gonna have a problem every 30 seconds, so that 90 days is gonna wait a long time, you know?

Sarah 1:08:27
Yeah, no, we're, we're super fortunate we, we actually just had a video visit last week. And I was so nervous because we started looping a couple months ago. And our office is, you know, they're super, super supportive and always have been, and I think one of the nurses is actually looping herself. And so I didn't think it would be a big deal. But still, it's like, there's always that anxiety that, you know, they'll be nervous about it or not want to help you with it. But they were, they were super excited for us and even offered to help us if we need it, which I think is almost unheard of, from what I've heard often say,

Scott Benner 1:09:10
yeah, that's the office then for sure. Yeah.

Unknown Speaker 1:09:12
Good for you. Oh, they're awesome. I

Scott Benner 1:09:15
mean, honestly, for somebody with let me just count real quick here. celiac type one, hypothyroidism, celiac? type one celiac, probably celiac. 123456. For a person living with seven different elements in their home. You're doing great. Thank you. You really are Yeah, anything wrong with you, by the way, the doesn't bend right. Anyway,

Sarah 1:09:38
I have some of my own autoimmune issues, but it's not celiac. And it's not type one. So yeah, I have other stuff going on. So hopefully that doesn't also make its way into the kids. But that's TBD.

Scott Benner 1:09:52
Well, we still have plenty of weed for them if they are suffering hippie.

Unknown Speaker 1:09:56
That's true.

Scott Benner 1:09:59
I I don't want to ask you, isn't it funny? Like I had no trouble asking you about three other people's health concerns. And then when you said I have other things, I'm like, Oh, she doesn't seem like she wants to talk about those, I want to ask what they.

Sarah 1:10:11
So it's funny because I don't mind talking about it at all. It's kind of, it's funny to talk about because there's never really been like a name attached to it. So I have a lot of the things that come along with lupus, but I don't have enough of the different symptoms for a lupus diagnosis. Okay. So I kind of have like, lupus light.

Scott Benner 1:10:36
What is what are the symptoms that, that people?

Sarah 1:10:41
So I went through a lot of years with, like, constant fevers, and just like general signs of inflammation in my body. And fevers all the time, like, achy skin, like almost when you have the flu, and it hurts when you're close touch you. That kind of thing. Yeah, it was just kind of a bizarre set of symptoms, just like constant fatigue. Yeah,

Scott Benner 1:11:14
that sucks. Jesus, you guys all found each other. It's good. It's good that you found each other? Honestly, it is. Yeah, no, he's a nice support system here. Somebody who doesn't have any symptoms of anything might be like, I like Sarah a lot. But she says that her shirt hurts her arm. So I'm getting out of this. But

Sarah 1:11:31
like, the funny thing is, I think of us is a really healthy family. Because everyone manages what they have going on. None of the things going on stop us from doing anything. We're all active and healthy. Like, I don't think of us as having various ailments, even though we do.

Scott Benner 1:11:53
I have to tell you how much I agree with you. Because I think of Arden is an incredibly healthy person.

Unknown Speaker 1:11:59
Yeah,

Scott Benner 1:11:59
yeah. And she does have stuff, you know what I mean? Like there's Yeah, don't working through her her thyroid. Like settings, actually, she's got to go get blood drawn, today or tomorrow to look again. And that's one of the problems when you're getting these things adjusted. It's like you almost have to go give blood like it's constant so that the doctor can can really like narrow it down. And I would not describe hardness sick. And never, it never occurred to me, actually.

Sarah 1:12:28
Nope. No, I like when I think of our family. I think we're healthy. Yeah. No, even though I know on paper, the insurance company would disagree. But

Scott Benner 1:12:38
they'd be like, like a big red stamp. Looks like these people out of here somehow. You know, I agree with you. I am I have a very similar if not exactly the same feeling. I think that, that it's probably a bit of a fallacy that people go through life with no problems. I think some people's problems are just a little more persistent than others sometimes. And, you know, to think that you somehow got shaken out of a perfect life. It was this or something else, you know, like you weren't, yeah, it just wasn't gonna go that way. Especially, I don't want to like, you know, I'm not gonna get on a soapbox or anything, but we make a lot of processed foods. And there's a lot of factory farming in the United States. There's a lot of people here we're trying to feed, and there's a lot of fast food for people who can't afford more. And so there are good reasons for everything that exists. But it's just not natural. And I think it's been hard on us. Yeah, you know, for sure. And I think that you and your family and probably my family and a lot of other people are, are seeing what happens after, you know, a couple of generations of red dye number or whatever. Don't worry, yeah,

Unknown Speaker 1:13:47
it's just like, yeah, I've

Sarah 1:13:50
read that the incidence of type one is going up, but they don't really No, why?

Scott Benner 1:13:55
Yeah, well, I mean, the incidences of a lot of things is, seems to be rising. And, you know, sometimes you could look at it and say that there's more people on the planet. But, you know, I just I don't know how to argue with the idea that there are things that we eat, that aren't food, and that can't possibly be good for you. Right? So, yeah, Twinkies shouldn't last for 100 years. And if it does, you probably don't need it.

Sarah 1:14:20
Now, and thankfully, those are not gluten free. They don't make a gluten free version of that. So I don't have to buy those for my kids.

Scott Benner 1:14:27
I'll tell you there's a it's a video somewhere you can find online, but I think it's a McDonald's cheeseburger that someone leaves out. Oh, God never age. So you leave a real cheeseburger out and bugs want to eat it and it gets really disgusting and it starts degrading, but apparently not a McDonald's cheeseburger. It'll hang on forever.

Sarah 1:14:49
Yeah, that's just wrong. not okay.

Scott Benner 1:14:51
And by the way, McDonald's makes the best fast food french fries of the fast food restaurants in my opinion. I'm just saying. They also have

Unknown Speaker 1:14:59
yeah

Sarah 1:15:01
McDonald's. Yeah, they're not super celiac friendly. So actually, my kids have never eaten McDonald's before. Well, that's good. Like, well, yeah, I think that's very good for an American. It's kind of weird.

Scott Benner 1:15:14
There's Um, let's see. This is an article from Oh, it's so funny that if you google McDonald's fries, silicone. It said like there's a an article from 2015. You know, it's a while ago, that says something about let's see, 14 ingredients and McDonald's fries including petrol, bass, chemical and form of silicone found in silly putty. And then there's another one that's only a couple of years old. Scientists say chemicals used in cooking McDonald's fries could help cure baldness. So hey,

Unknown Speaker 1:15:53
listen, Jesus.

Scott Benner 1:15:56
I mean, you know, give a little get a little but but more interestingly, is that the third return is from McDonald's, and they've been pressed to put up a thing about silicon. Do you use silicone polymer in your frying oil as an anti foaming agent? Yes, minute quantities of Wow, dime file Polly ciloxan are present in our oil. Food great added above I have to tell you, one of the things I've done for my own health this year, is cut out processed. Any processor or heat pressed oils, I only use like cold pressed olive oil. I stopped using canola which I lived my whole life thinking was somehow better than oil. I don't use vegetable oil anymore. It's made a big difference. Like I cut those oils out and just went to an intermittent fasting schedule and like lost 16 pounds.

Unknown Speaker 1:16:52
Oh my gosh, that's all I changed.

Sarah 1:16:54
Yeah, that's like the thing right now. And I think I might die if I tried to do that. Because I'm like the eat every two hours type.

Scott Benner 1:17:02
It's 1246 here and I have not eaten yet today. My my, my, my, my time started 45 minutes ago. So the first thing I'm going to do when we say goodbye is eat something. But oh my gosh, um, but I'm smoking some turkey breasts right now, which are probably done, so

Unknown Speaker 1:17:16
I have to go. But that sounds good. Yeah,

Scott Benner 1:17:19
you were terrific. Thank you so much. You shared a lot of information that's valuable. And I can't thank you enough. Please. Thank everyone in your family for allowing you to talk about their health.

Sarah 1:17:30
Yeah, really? Yes. I had to. I felt like I needed to get clearance from my daughter. Like, yeah, how would you feel if I went on the podcast and she was super excited. Because she enjoys listening?

Scott Benner 1:17:42
Well, then she can come on whenever she wants to tell her. As long as she's interesting. You can hold up her into the conversation. I would love it.

Sarah 1:17:49
He has personality coming out of her ears. So you could let me know

Scott Benner 1:17:53
I'd be a good kid. I'd love to hear from a 12 year old about what it's like to have type one diabetes. I seriously would.

Sarah 1:18:00
So she she thoroughly enjoyed that episode with Dylan.

Scott Benner 1:18:05
Oh, he will be thrilled to pickle. Yes, he will be thrilled to know that. He really is. Well, okay. Hey, listen, let's say goodbye. And then you can send me another email and we'll set her up. All right, cool. Thanks so much for doing this. Yeah.

Sarah 1:18:20
Thank you for having me. I enjoyed talking to you.

Scott Benner 1:18:22
Hey, you were terrific. And your connections very clear. So bonus. Oh, good.

Sarah 1:18:26
Good. Because I'm yeah, I'm like, on my iPhone in the bedroom trying to stay away from all the noise and the rest of the house.

Scott Benner 1:18:33
It's really it's crystal clear. It sounds terrific. So thank you so much. Thanks so much to Sarah and her whole family for allowing her to come on and tell the autoimmune apocalypse story. Thanks also to Dexcom makers of the G six continuous glucose monitor to Omni pod makers of the Omni pod tubeless insulin pump, and of course touched by type one.org. Please visit the sponsors. Check out those links in your show notes. Subscribe in your podcast app. tell a friend about the show. Dun dun dun dun dun dun dun dun dun. Oh, are you looking for those diabetes pro tip episodes. You can check them out right here in your podcast player. They begin at Episode 210 where you can find them at diabetes pro tip.com. At that same link at the bottom are all the defining diabetes episodes. Right now the music's just gonna fade out and I'll be gone.

#439 How We Eat: Gluten Free

Type 1 Diabetes, Celiac and Gluten Free Eating

Lindsay is a type 1 who has Celiac and eats Gluten Free.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Amazon Alexa - Google Play/Android - iHeart Radio - Radio Public or your favorite podcast app.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to Episode 439 of the Juicebox Podcast. On today's show, I'm going to be speaking with Lindsay. And this episode is another in the how we eat series. So number 400 is how we eat carnivore. Number 373 how we eat vegan cat number 405 how we eat plant based. And today of course, we'll be talking about a gluten free diet, amongst many other things.

Lindsay has had Type One Diabetes for a very long time. She's also had celiac for a really long time, not as long as the diabetes, but still, you'll see. Today she's on the show to tell her story. And of course, we're going to talk about how she eats. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with insulin.

I don't normally do this. But Lindsay, if you're listening, I just went back to see your initial email that you sent me and your life is so full and rich. And we basically didn't talk about any of it. So you can come back on whenever you want. Send me an email.

No kidding. We should never have talked about the celiac Look at all this stuff. Oh, Captain that says firefighter business owner skydiving marathon. does that say? Wait? Hold on a second deckhand. I deckhand on a fishing boat, not a boat, Captain. I mean, I've never been on a boat. So it all kind of seems the same to me. Anyway, before we get started, let me just throw my deep voice and tell you that nothing. No, I was already said that. Oh boy, here we go. This episode of The Juicebox Podcast is sponsored by the Dexcom g six continuous glucose monitor, head over to dexcom.com Ford slash juice box to learn more about the CGM that I think is life changing for people who are using insulin. And of course, the insulin pump that my daughter has been using, since she was four years old is the Omni pod. And it is a tubeless insulin pump. Why don't you check it out and even get them to send you a free no obligation demo by going to my Omni pod.com Ford slash juice box. While you're out there on the internet checkout touched by type one.org, two great little organization that does amazing things for people with type one diabetes, touch by type one.org. And you can find them on Facebook and Instagram. And the person who started touched by type one is going to be on the show in a couple of weeks.

Lindsay 3:01
My name is Lindsay, I live in New Jersey. I've been a type one for a while since I was six years old. So for about 27 years. I just hit my 27th year in July. And I've been celiac for about 16 years. Okay,

Scott Benner 3:23
how did the celiac present itself.

Lindsay 3:27
So when I switched doctors from a pediatric endocrinologist to an adult doctor when I was a teenager, they ran it the celiac test as a random routine test for new patients. And the one marker did come back positive. Of course, when they do the blood work, it'll come back positive but then it has to be confirmed with a biopsy through an endoscopy which was also done and it was confirmed. I I had no idea at the time what it was I'd never heard of it. My mom had never heard of it. And we kind of we started from that point. Totally gluten free.

Scott Benner 4:13
So were you living with type one for about a decade without understanding that you had celiac do you think?

Lindsay 4:19
Yes, I do. And in looking back in hindsight, I always had just kind of like a funky stomach i can't i have no other way to describe it. I'm just very, very agitated I was uncomfortable a lot and I felt like it was a lot more than it should be. So all throughout elementary and middle school I just was in a lot of discomfort and looking back now I do believe that I was celiac positive at that point.

Scott Benner 4:52
I'm trying to decide if you guys come on and try to name the shows while you're talking because I'm very drawn to funky stomach as the title for this episode. Just you You know,

Unknown Speaker 5:00
I love it.

Lindsay 5:01
I think it's I think it's a great title

Scott Benner 5:04
to work towards celiac in there somewhere. So people understand why but I think funky stomach is very strong. Okay, so that that's what you know, it's so funny, you're gonna be great at this because I had a question for you. And you answered the question and just continued talking. I was like, Oh, this is gonna be easy for me, thank God. But um, okay, so let's put a little bit of context to funky stomach so that people who may be experiencing the same thing understand, what what did you notice what was happening?

Unknown Speaker 5:38
What was that?

Scott Benner 5:39
What What did you notice? Like what made you like, you know, did you eat something? And then or were you not connecting the dots in those first 10 years? Did you say

Lindsay 5:48
yours? I don't think I was connecting the dots at all. Nor were my parents. I think we had been to the gastroenterologist, and then to the doctor, and we were always really on top of my health all throughout my entire life, basically. But I think at that point, a lot of people didn't really think celiac, they didn't really think all of these other things, that could be the problem. You know, they just kind of would brush it off and say, Oh, it's, it's a funky stomach, or it's your genes, or, you know, maybe you have a sensitivity but we don't, we're not that concerned about it.

Scott Benner 6:27
So they weren't that concerned with you. They weren't that concerned, because they weren't in the bathroom with you after you ate. I bet you were concerned. Right?

Lindsay 6:34
Well, they weren't living with me. And, you know, I know a lot of other people with celiac and undiagnosed celiac. Say that they struggle like in the bathroom. They really, they really are their lives are affected terribly. And I don't think I was ever at that point. It didn't seem to be that drastic for me. But yeah, I think we just kind of brushed it off for the first 10 years. And then once we put the pieces together, and once we got the diagnosis, I it really all started to make sense. And the symptoms, now that I know their bloating, their discomfort, diarrhea, nausea, I never had any vomiting, but I was often very tired, just kind of lethargic. And those really do fit the bill. Okay,

Scott Benner 7:26
so you eat something that doesn't, let's just say agree with your, with your system. And then what's the timing? How long does it take for symptoms to pop up? How long do they last?

Lindsay 7:38
So for celiac, for me, I would notice symptoms within about a half hour, I would say half hour to an hour. And I really don't know how that's possible. And I've asked this question to my doctor several times, we've kind of come up with an answer, which is a whole other conversation that I can touch on. But the celiac affects your small intestine. So for food to get to your small intestine, it's going to take quite a while. So I'm not really sure how I'm symptomatic in such a small frame of time. But the one the one thing that I was going to mention is that I have figured out some other foods that I've had issues with which has led me to also being on a low fodmap diet, which is an acronym for different types of carbohydrates that are difficult to digest. And that's really where like a lot of different discomfort was coming from as well.

Scott Benner 8:38
Okay. All right. So it's something it hits you pretty quickly. discomfort comes in all the ways that you described, does it last for hours days,

Lindsay 8:49
it will last for days. So if I eat something with gluten in it, I will have severe just exhaustion, achy, achy, Enos almost flu like or mild flu like symptoms, just feeling absolutely terrible. And that will last for me for probably a couple of days. And the only thing I would be able to do to try and help that along is just hydrate, drink a ton of water. I exercise a lot. So I would do my best to really continue exercising. I feel like that can only help and just do your best to filter out whatever toxins. You know, I have in my body. It's

Scott Benner 9:34
crazy. It really is strange. And I'm assuming if you don't understand that this is why it's happening for food reasons. Then you probably eat something that makes it keep going daily, right? There's probably no really getting out of it back before you understand. It's just you just think you have a funky stomach.

Unknown Speaker 9:51
Right, exactly.

Unknown Speaker 9:52
And I say, for me,

Lindsay 9:54
I love food. I've always been a great eater even when I was a baby. So We were eating all sorts of different foods. And when I was little we were traveling and we were just having a ball. And, you know, almost I felt like everything I ate affected me negatively, in some way,

Scott Benner 10:13
because at some point probably in every meal, you had something even if it wasn't everything you had something that was impacting you. Oh, for sure.

Lindsay 10:21
Yeah, absolutely. And now knowing what it is gluten will hide in so many different things that people don't even know it's in. It's really

Scott Benner 10:31
tough. Tell me about that. Where would it exist? Like we think I would think of bread, right? I'd be like, Oh, I guess? I guess Lindsey doesn't eat pizza, and things like that. But where is it that we don't think of it.

Lindsay 10:43
So other things would be different kinds of sauces. So some salad dressings like thick pasta sauces, like a Baka sauce, Alfredo sauce, soups, a lot of soups have have wheat flour and gluten in it. It's really a thickener. It's it's a protein. So it binds food. It makes food sick and yummy and delicious. And unfortunately, you know, those are those are off the table. A lot of people we eat a lot of sushi. So a lot of people don't realize soy sauce has wheat in it. Beer, a lot of different alcoholic beverages if you're over 21 Yeah, and of course, bread. Oh, any any kind of carb karvy? Would it starchy food?

Scott Benner 11:35
Would it be easier to list the things that don't have gluten in it? Yeah,

Lindsay 11:40
it would, it would. And it's, it's really like vegetables, fruit, chicken, fish steak. Those things are naturally gluten free. And then, over the years, and since I was diagnosed, it's become a real market for food. So there's so many different options now. So we have breads and pastas and all sorts of sweet treats and anything we could possibly imagine.

Scott Benner 12:07
Um, it's an autoimmune disease. Is that right?

Unknown Speaker 12:11
It is Yes.

Scott Benner 12:12
Is that your only other autoimmune type? Just type one in celiac?

Unknown Speaker 12:17
Yes.

Scott Benner 12:18
Gotcha. And it so is it. The lining in it? Like I know you said the small intestines, but it's something about the lining in the small intestines is there like flattened out or something like that? or?

Lindsay 12:30
Yeah, so your small intestine has lining, they're made up of small little finger like objects called v lie. And when a celiac patient eats gluten, the gluten, the body attacks that gluten as an invader, and it will the villa will become flattened out. So normally, they're like hair like structures, they absorb things, they catch things as they travel through the small intestine. And it will become they will become flattened out over time. Which really then causes inflammation, damage. And then of course, other things from that point, which would be malabsorption. of anything that you're eating anemia and, and all sorts of different other problems.

Scott Benner 13:23
So then you start with Once this happens once the gluten attacks, that lining and starts flattening it out and causing all these other problems, you're also going to start having trouble absorbing other nutrients as well, correct?

Lindsay 13:37
Yeah, correct. And a lot of patients with celiac who are undiagnosed, are really quite underweight, or just very unhealthy. They obviously, I would think most of them feel terrible. And they're just not they're not thriving.

Scott Benner 13:52
Yeah. That's very interesting and timely for me. Because if you if you listen to the podcast, I don't think I've said it out loud, like completely, because I'm still trying to figure out how to talk about it. But I've learned that it's possible. I have a genetic problem where I can't absorb iron. Okay.

Unknown Speaker 14:09
Yeah. And

Scott Benner 14:11
so I've had a lot of these different tests, you know, and the endoscopy the other way, you know,

Unknown Speaker 14:19
lovely. Yeah,

Scott Benner 14:19
I've swallowed a camera that was fun. Or like this purse around my neck for a bunch of hours. And I could just pick it up and look at this little screen and watch the camera go through my system. And oh, my gosh, yeah, kind of cool. Well, yeah, I mean, but the camera came out, Lindsay

Lindsay 14:37
I'm glad it came out, though.

Scott Benner 14:38
Yeah, I'm just saying that part I wasn't as thrilled about and it but it's very interesting that these two things, they do sort of mimic each other. I have just started the process of getting involved in a study for people who don't absorb iron that's happening out of Boston Children's I think, okay, and We might be figuring out that my son has it as well. Oh, wow. But it's just it's very interesting to see to how it affects me. But he being younger and more kind of, you know, vital than I am, obviously, where he can kind of overpower some of the symptoms, unlike this where this would just down anybody. It's just really fascinating that that it's all the idea of your immune system seeing something incorrectly, like just it's seeing the gluten incorrectly. That's the entirety of the problem. Is that really it?

Lindsay 15:33
I believe so. To the best of my knowledge. Yes. And it is. It is very interesting. It's very scary. autoimmune diseases, as you know, there's just so many question marks, and there's so many of them. And nobody really knows why this seems to happen. Yeah, it's quite

Scott Benner 15:51
scary. Why did people stop calling it celiac? sprue?

Unknown Speaker 15:55
Oh, I really don't know. I

Lindsay 15:58
think people, I think people are just getting a little bit more used to it now. So just calling it

Unknown Speaker 16:02
celiac.

Scott Benner 16:03
My wife's grandmother, me and my wife's grandmother had it. Excuse me. And she if you asked her what was wrong, she's like, I've got the sprue

Lindsay 16:12
I think I'm gonna start saying, Yeah, just start telling people you really, really interesting.

Scott Benner 16:18
I have the sprue. I'm gonna read. I'm gonna read for a second an autoimmune reaction to eating gluten, a protein found in wheat, barley and rye over time, the immune reaction to eating gluten creates inflammation that damages the small intestines lining, leading to medical complications, it also prevents absorption of some nutrients. The classic symptoms of like you mentioned diarrhea, other symptoms include bloating, gas, fatigue, low blood count, anemia, osteoporosis, and many people can have this without symptoms. That's interesting. a mainstay of treatment is strict gluten free diet that can help manage symptoms and promote intestinal healing. Okay, so once you figure this all out, and you switch to a gluten free diet, back before it was hip to say you weren't eating gluten. And before it was hip, I'm assuming it was difficult to find things that didn't have gluten in it, what did you do in the beginning,

Lindsay 17:08
I remember it being very difficult. I remember really going through a whole extensive list of foods that I was going to have to eliminate from my diet. And being in high school, I, I was kind of in denial about it. I was like, Oh, this, you know, this isn't really a big deal. I'll figure it out. And maybe I'll have a you know, sneak a cookie here and there. If I really want one that didn't last very long. Because once I realized what I was doing to myself, just with one cookie, I really kind of had like, a total 180 I couldn't continue on that path. So we eliminated and we meaning my parents and I a lot of different foods and and we had to just totally navigate the food store in a different way. At that point, there was some pasta that was out which was made from keen Wah, and maybe some some rice pasta, but other than that, there wasn't much of anything at all. Okay.

Scott Benner 18:13
Yeah, and now there's a ton of stuff, but it's expensive, right?

Unknown Speaker 18:18
Yeah,

Lindsay 18:18
there's a ton of stuff. And it's, it's pretty exciting. And I always tell people, like being celiac for so long now. It really makes food more exciting. If I find like a cupcake that I can eat or a really great bakery. It's just the most exciting day like, of the year so um, it that's that's definitely the positive but one of the negatives is yes, it is very expensive. I but when you when you don't have a choice, you just

Scott Benner 18:49
No, of course, I was wondering if you can't submit your your grocery bill to your health insurance company. That'd be interesting.

Lindsay 18:56
Yeah, that would be interesting. I we can as far as I know, and I think I do still do this. But we can write off gluten free foods from our tax taxes. But you know, your write offs are not super significant with that stuff.

Scott Benner 19:12
Yeah, yeah. write offs are more exciting to talk about than they are when you watch how they kind of come together in your tax situation. Like I did all this. I have this I have that. And then the guy comes back and he's he tells me he's like, Oh, yeah, it's good thing. You sent all this stuff in because it decreased your bill by and I'm like, that's not enough money. Like what do you

Unknown Speaker 19:31
know, it's like $100 there's

Scott Benner 19:34
not exciting. You didn't excite me with it. But that's interesting that you can do that. Okay, so what is a like, what's a day's worth of meals? Like for people who are listening right now who may think they have this and you know, what do you get to eat and did you eventually get accustomed to it? Alright, I feel some fast talking coming on. I'm gonna get through all the ads without stopping here we go. The Dexcom g six continuous glucose monitor is a staple in my daughter's life. We make decisions about insulin dosing, direction and speed of her blood sugar, all from the Dexcom g sex, I can watch it on my iPhone. If you had an Android, you could watch it from there as well. Arden loves it. She loves not having to do her finger sticks. She loves being able to see the speed and direction of her blood sugar. She loves that we can Pre-Bolus and make good decisions about her meals that keep her blood sugar's in a stable range. There's no more guessing about where your blood sugar is, or if it's moving when you have the Dexcom because you can see the speed and direction. And a moment ago I said I can see Arden's blood sugar on my phone. Well, that's because she can share her information. If she wants to. With up to 10 followers. This is for Android or iPhone. Please, please take it from me when I tell you that I was not nearly as good at diabetes before Dexcom. As I am now with it, check it out@dexcom.com forward slash juice box. There are actually links in the show notes of your podcast player, and at Juicebox Podcast comm if you can't remember the link now onto the AMI pod. My daughter started wearing it when she was four because I didn't want to send her to school on shots. So we got her on it before kindergarten started. And we have never looked back. She is 16 right now. And she has more than Omnipod every day for the last 12 years. And it's been a friend the entire time. She's worn it while she's swimming while she's running while she's playing softball, taking a shower and doing all of the other things that everyone does every day on the pod gives you the freedom to hide the pot if you want. Or to wear it out where people can see it, it doesn't matter. It's completely flexible with your needs. And there's no tubing, you are not connected to a device or a controller when you're using the Omni pod. And that is an amazing feeling of freedom. My Omni pod.com forward slash juice box on the power be thrilled to send you a free and no obligation demo of the pod right now. We'll send it to your house so you can wear it and see. If you don't like it, it's cool. And if you do, you can just keep going. It's amazing. Miami pod.com forward slash juice box. Speaking of amazing, Elizabeth forest started touched by type one a very long time ago. And she is building an amazing machine over there. A machine that helps people with type one diabetes, I told you earlier Elizabeth is going to be on the show pretty soon. But in the meantime, you can check out what she and the organization are doing at touched by type one.org. As a matter of fact, I'm doing a little thing for touch by type one at the end of February. And if you'd like to come you can just go to their website and sign up. It's absolutely free. Touched by type one.org go to programs then upcoming events. And there it is February 26 bold with insulin life. They're also by the way on Facebook and Instagram. So check them out. I'm on Facebook and Instagram as well. But I didn't buy an ad on the show. So I'm probably not allowed to talk about it here. I should probably ask the boss. I just heard back. And it turns out if I wanted to talk about my Facebook and Instagram here, I'm allowed to make Juicebox Podcast on Instagram and bold with insulin on Facebook. That's the public page. And the private page is Juicebox Podcast type one diabetes. And I have a blog Juicebox podcast.com. Actually, there's diabetes pro tip.com as well just want the diabetes pro tip episodes, as well as the defining diabetes stuff. I mean, it's all right there and your podcast player but those are a quicker way to do it. If you're just looking for them. Diabetes pro tip.com.

Lindsay 23:57
Absolutely, I did get accustomed to it. I did. It took me a little while to really get into a groove with what I like to eat and what I didn't like to eat. I mean, right now. There are so many options. So there's so many different choices for people, but a day's worth of food for me. Breakfast I often have like a piece of gluten free toast with almond butter. I eat eggs a lot. So eggs are gluten free. protein shakes, I found some protein that is it's vegan and gluten free and it doesn't upset my stomach. Lunch I eat I eat fruit IE yogurts. I'm also dairy free, so I'm just going to throw that out there. So all my yogurts are coconut and almond and non dairy. And I feel like I have a huge variety of foods that I choose from but I'm like not thinking of all of them right now. I mean, we eat a lot Lot of food in this house, so we're definitely not not eating.

Scott Benner 25:05
What happens like, Are you married?

Lindsay 25:08
Not yet, but hopefully soon. If he's listening from the other room, maybe we can take that as a hand. Oh,

Scott Benner 25:13
okay. Well, I mean, I can try What? What's his name?

Unknown Speaker 25:18
Brian,

Scott Benner 25:18
Brian, buy a ring. What are you doing? There you go, maybe? And but that's my question is the people that you you live with? Do they have to eat this way with you too? Or is it just impossible to not? Or is it? Do you just make two meals? How do you manage,

Lindsay 25:34
so he eats gluten free with me as well. We aren't a totally gluten free household. So he has his own bread, and English muffins, and he has his own beer. So some things are in the house that are not gluten free. But when I make a meal, and I do most of the cooking, I will just prepare gluten free meal. So he enjoys the pasta, he really can't tell the difference. desserts really the same thing. He'll eat everything. And he has no complaints about it. So it just makes it a little bit easier when you're when you're making full meals.

Scott Benner 26:11
you're cooking, and he hasn't bought a ring. That's all I heard. Just in case you're wondering. I would love for someone to cook for me honestly

Unknown Speaker 26:18
is a wonderful guy. I'm

Scott Benner 26:19
sure I just want somebody to cook for me is really what I'm saying. But here's what you get when you're cooking. as near as I can tell, no one knows how much effort goes into it. And if they don't like it, they're very quick to tell you. This wasn't very good. You like oh, well, it still took me three hours. So I really appreciate you saying that. It's seriously,

Unknown Speaker 26:40
it's not fair.

Scott Benner 26:41
Do you find yourself trying to approximate, quote unquote, food from before in a gluten way? In a non gluten way? Or like Like you said, you said there's a pasta that doesn't have gluten in it. But is there a way to just throw away? You know, modern eating? And like, What? How would you do that? Does that make sense?

Lindsay 27:04
I'm not sure I understand. You mean like, if we, if we just didn't have the pasta? Well, no,

Scott Benner 27:12
I guess what I'm saying is that there's a way people think about eating right. Like and you know, you'll say to someone, well, you can't have gluten anymore. And they're like, oh, and they start thinking no bread, no pasta, all these other things. But But is there a way to just walk away from them and go, I just don't eat bread anymore? I don't need a bread that doesn't have gluten in it? What would that look like? If you just walked away from modern foods, and went to things that didn't have gluten in it? Would you just be chewing on sticks and eating steaks or like you don't mean like, I'm trying to understand, like, I'm trying to really understand what a person would do. If they couldn't afford to buy what I'm assuming is a very expensive cupcake so that it actually tastes like a cupcake and doesn't have gluten in it.

Lindsay 27:52
Yeah, it's very true. That that is very expensive. The foods and especially the really well made, desserts and products are expensive. So it is unfortunate that there is a difference there. You know, if somebody was to really just totally eliminate any kind of gluten item, or were you know, trying to buy the gluten free items, you would have all natural and all things made from the earth basically vegetables, fruits, meats, chicken fish. Rice is a big one. I'm not sure you know, I think rice is is pretty easily attainable. But yeah, you would probably eat really, really well as long as you balance things out as much as possible.

Scott Benner 28:42
And just the way that we would consider like clean. Like right, no additives, it is what you see there. This is a This is rice, this is a steak there's nothing else that has been put into it or added there's no anything else to it. This is this is the basics like staples.

Lindsay 28:58
Absolutely, yeah. And it really would be a wonderful way to go about eating gluten free. In my opinion, I think you would really you probably feel better overall, as long as you're choosing the right veggies and fruits and you know, whatever works for you, especially with a type one. I think it would be it would be great. And a lot of people with celiac have kind of like rose colored glasses about the gluten free food. A lot of it is really not great for you. There are other things that have to be added to make it you know, soft and mushy and sweet and this and that. So just because it's gluten free doesn't mean that it is healthy. There are things that you can eat on occasion, but it's not. It's I don't think it's any better for you than the non gluten free option.

Scott Benner 29:52
So I brought that I'm glad you brought that up because when I was going through all the testing to figure out my iron issue the one time the doctor just says to me Look, you don't appear to have a gluten sensitivity at all. He does. But let's test it. I was like, Okay. And so he says, so for a month, eat gluten free. And I did. And I put on weight from the I went broke, I felt like and I put on weight is what is how I felt and didn't feel any differently? Because of course I I'm not, I don't have celiac. So it was, it was it was an interesting month of I didn't find it to be off putting, like there's some bread that's fantastically good that doesn't have gluten in it. Oh, yeah, I feel I figured that out. But then I started learning what you were talking about, which is there's just gluten things that you wouldn't, you don't expect and so but but anyway, it just I did, I gained, I gained a few pounds. And I was like, That's fascinating. Because in my mind, I thought, Oh, I'm eating healthier. Right? And in you just set it it's not necessarily the case. It's there's a lot of other things that are going in, I'm assuming that have calories in them to try to make flavor in different ways. Is that kind of the idea?

Lindsay 31:04
Absolutely. Yeah, I think I can't speak for every single product. But I think a lot of the gluten free products out there are probably more calorie dense than some of the non gluten free counterparts. I think that there's it's not so much bad stuff, but it's just more stuff. Potentially in some some products when people think they are actually doing better for themselves, which if they're eating gluten free they are but of course, you know, loading up on all sorts of different gluten free treats, if not better for you.

Scott Benner 31:34
Yeah, you're sort of trading one problem for another one.

Unknown Speaker 31:37
Exactly.

Unknown Speaker 31:38
Yeah. Okay.

Scott Benner 31:39
So what is this is one of my favorite words that I don't particularly understand fodmap What, what is what does that mean? When people say I'm gonna do like a low fodmap diet.

Lindsay 31:52
So a low fodmap diet, I don't have all of the words for each part of the fodmap acronym,

Scott Benner 31:59
or you talk

Unknown Speaker 32:01
to bowl,

Lindsay 32:02
Holy Ghost something. There are certain kinds of carbohydrate that just simply are not well broken down and digested also by the small intestine. So a lot of times this food and it's not it's other food like apples and, and different sweeteners, like I think xylitol is one brussel sprouts, all sorts of different foods. They they're not well broken down, and they end up kind of sitting in your intestinal tract. And they start to almost like ferment, which, of course, causes inflammation, bloating, gassiness, discomfort. And the when I was diagnosed celiac, that was one thing and then I ended up eliminating dairy. Several years later, which I was having some issues with. And then a few years after that, I kind of honed in with my gastro on this low fodmap diet. And once I did that, I felt amazing. And it's been quite some time now where I've been on this diet or I don't even like to call it a diet but following this lifestyle and I feel like 100%

Scott Benner 33:22
Okay, let me take a shot at this right. No one laughed at me. fodmap is an acronym for fermentable oligo die mono, sack chlorides and Polly OLS.

Unknown Speaker 33:40
Sounds right, does

Scott Benner 33:40
it that can't possibly be right. But they they are short chain carbohydrates that are poorly absorbed in the small intestine and prone to absorb water and ferment in the colon. I don't think we went anything fermenting in our colon ever. That's um, I'm gonna make that statement right here now.

Unknown Speaker 33:59
No, you don't.

Scott Benner 34:00
So make. So I'm trying to get a feeling for what what would be on a low fodmap diet.

Lindsay 34:10
So the things that I really eat a lot of broccoli, sweet potatoes, those are all low in fodmaps blueberries, raspberries non dairy foods are low fodmap so we drink almond milk in the house and any kind of non dairy

Unknown Speaker 34:32
you know, substance Yeah,

Lindsay 34:34
I'm brown rice, almond a peanut butter.

Unknown Speaker 34:40
Eggs.

Lindsay 34:41
Those are all low fodmap

Scott Benner 34:43
Okay, so I found one now that I'm looking at and it's funny we don't we buy milk that has no lactose in it just for because it seemed like the thing to do and nobody really drinks milk all that often here. But I like how this this this chart I found is It says avoid excess glucose, lactose, a bunch of different vegetables that I guess you wouldn't expect. asparagus, beet root broccoli, brussel sprouts, cabbage, eggplant, garlic, onions, shallots. those are those are avoids.

Lindsay 35:16
Yeah. So I eat broccoli with no problem, which is interesting. But yeah, the like tomatoes and onions. Avocados bother me. I think they're on the list as well.

Scott Benner 35:29
Did you just do what the kids call? What is that called when you're showing off but you're trying to act like you're not? Damn it? I can't think of it. I'm so not a kid. But you were just like I eat brussel sprouts. Like, like you were a superhero.

Unknown Speaker 35:43
I'm so cool. My broccoli over here. Oh,

Scott Benner 35:47
yeah, yeah, broccoli, no trouble here. I get knocked down like it's nothing. A lot of Polly the polyols apples, apricots, avocados. That's really interesting. But then the other side of it says you can enjoy and then it gives you a whole list of things like don't feel bad because you could have a mandarin. The Oh, that's really interesting. The vegetables are more bamboo shoots alfalfa, beet shoots. Celery, celery. Does anyone enjoy Sorry?

Unknown Speaker 36:18
Do you want to say that I

Lindsay 36:19
just said yesterday how much I love celery. And I'm sure everybody's gonna make fun of me for saying that.

Scott Benner 36:23
He loves celery. strong, strong second episode title right there. Oh, parsnips you can finally Hey, listen, everybody, you can finally learn what a parsnip is. Is this your time? Go on Facebook later and tell people about it. I know what a parsnip is. I'm low fodmap you'll make all kinds of friends. But the but the the real story here is that you say you feel amazing.

Lindsay 36:51
I do. Okay. Yeah, I do. I was really, I was really struggling with really the most thing. The biggest thing that I struggled with was the fodmap issue. And if I the one example I can think of is for years, I was having a protein shake after a workout or in the morning for breakfast, and I would put peanut butter and and blueberries and whatever almond milk in it. And it was a couple hours later, I would be just so uncomfortable. I would be so bloated. I'm just uncomfortable, gassy, bloated, whatever. So I was I spent a year trying to figure out what the heck it was. And it was the protein powder. It was the vegan protein powder was made from pea protein, which is I really think it's the most common vegan like plant based protein powder. The pea protein was killing me and I now know that and it's like eliminated so many issues. For me I use rice protein, which doesn't cause any kind of adverse reactions.

Scott Benner 38:01
No kidding. By the way, the thing I was trying to think of earlier humblebrag

Lindsay 38:07
Do you hear my Omni pod beeping in the background here?

Unknown Speaker 38:10
I do. Are you are you putting it on right now? No, I

Lindsay 38:13
had it. Oh, it's expiring. Here we go.

Scott Benner 38:19
That's that. tan tan tan tan like I'm getting up calm down.

Unknown Speaker 38:23
Yeah, relax.

Scott Benner 38:27
All right. Um, so you found a guy who's willing to do it with you not buy a ring, but he's willing to eat gluten free? That's nice. And and you feel 1,000,000%? Better? Talk about a little bit? What is it like to tell another person you're gluten free? Especially when it became chic for a while? Did people look at you sideways? Or do you just keep it yourself?

Lindsay 38:52
I felt that way. Yeah, I felt that people were getting a little judgy with me. Just because I always worry that people think I'm doing it just to kind of get attention or to stand out. And that's, that's not the case at all. I don't want that extra attention and care, like from, you know, random people or from anybody. So that was really my biggest concern, telling people initially, I'm kind of outgoing, so I don't really have a problem talking about it. The same thing with with type one. I really don't have any issues talking about it. But I always do wonder if people think I'm just like, exaggerating something or you know, being difficult

Scott Benner 39:34
right now. I mean, it did really become like she gets the word like everybody stopped eating. Like, I'm not going to eat gluten. I farted once I'm not going to eat gluten anymore. You know, like that kind of thing. And it's a common thing when I was looking earlier, it's there's more than 200,000 cases a year in the US which makes it a common element. But Wow, even when you say that, I mean think of you know, you heard a lot more than 200,000 people tell you they don't eat gluten. I mean More especially online where everybody's like, Oh, I don't eat gluten, I don't do that. And I'm not saying like you even. I mean, it seems to me that even if you don't have celiac not eating gluten might be a really, you know, healthy thing for you to do. Right? Just because, you know, isn't that interesting, like, what we're talking about here is a lot of foods that, you know, are very, and I don't know how to talk about this correctly, but, you know, processing wheat is, is a is not a thing we've been doing forever, you know, like crushing wheat and turning it into flour and processing foods in general, is still a more, you know, hundreds of years, you know, 1000s of years thing, not millions of years thing. And so, I mean, you're there's just a list here of things that, you know, you would eat if you were wandering around in America or somewhere else on the planet and trying to fend for yourself out of trees and bushes and things like that. Seriously. Right, you know, yeah. And then some brilliant guy comes along and figures out puff pastry, and now you know, you can't poop, right? It just, it's not fair.

Lindsay 41:05
It causes a whole bunch of problems. And who knows? A lot of people say that they do think and there's been studies showing that that could be considered part of the problem here. You know, personally speaking, I, I try and avoid as much processed food gluten free food as possible. But I also love to eat and I love to eat well. And and, you know, we it has to balance, it has to be a balance. But with with people going gluten free, just voluntarily. There's a lot of people that do it. And I think a lot of people do it, because they're also having issues. They're having digestive issues. They're bloated. They don't know what the heck is wrong. And hey, why not try it, see if it helps. And if it helps them, whatever it is good.

Scott Benner 42:00
Is that considered like a gluten sensitivity? If you don't have like, the full blown, you know?

Unknown Speaker 42:05
Yeah, like, yeah, so

Lindsay 42:07
gluten sensitivity would, as far as I understand, it would not be considered an autoimmune disease. But something's something's going on with your body just doesn't like the gluten protein. Yeah,

Scott Benner 42:19
so that. So that low fodmap way of eating could help with other like gastrointestinal problems, and like irritable bowel, bloating, stuff like that, like it could really address a lot of different issues.

Lindsay 42:31
Absolutely. A lot of people with IBS and Crohn's do follow the low fodmap diet. It as far as I've heard, it helps immensely with those issues.

Scott Benner 42:42
I gotta say anything that stops something from fermenting in my colon, I think is probably a good idea. I, I try really hard. This last year, I've been, I should say, trying hard and succeeding in not eating processed foods. So I just sort of made a blanket statement to myself, like, if it comes in a bag, or a box, I stay away from it. Even down to like, you know, different oils, like I won't, I won't use an olive oil that's heat pressed or processed. I only use cold pressed non processed olive oil to cook with. No, and it's made a difference I am since the beginning of the corona outbreak, and I've said it on here a couple of times. But you know, as as we were all like kind of getting like locked into our houses. I looked at myself in the mirror and I thought, yeah, this isn't gonna go well for you, you know, and you're gonna end bad Oh, my god. I'm like, I don't know if they'll be able to get me back out the door once they get me in the house. Right? And so I was like, I was like, What do I do? And all I did was I cut out certain oils. I only use cold pressed non processed oil that I do use, and I'm eating on a What do they call that? I it's weird that I'm doing it. And I say that to people all the time. And now when I need the word when I'm being recorded, I can't think of it but holy hell, Lindsey I only eat

Unknown Speaker 44:11
organic or it's

Scott Benner 44:13
about the timing. This is embarrassing. Um, I swear I'm actually doing it. What are they everyone listening right now is yelling if this is what it's called, idiot, I don't even do it. And I know what it is. Intermittent fasting, I eat on an intermittent fasting schedule. So I choose eight hours of the day, normally between 11 and seven or if I get pinched in the morning, like from noon to eight and I only eat in that timeframe. Okay, and so beyond taking out processed stuff, and only in that timeframe. I haven't changed anything and I might be close to 30 pounds down since the being a Corona then no,

Unknown Speaker 44:52
wow.

Scott Benner 44:53
not interesting and I'm not limiting myself during the eight hours.

Lindsay 44:56
Good for you. That's amazing.

Scott Benner 44:58
Yeah, I'm But as you're talking, and this whole series that I'm going to do here about different ways that people eat, I've just become very interested in it. Like someone had a Dorito the other day, and I looked at it, and I thought, there would have been a time in my life where I would have seen a Dorito and thought to myself, those things are so fake, and they taste like crap. And then I would have eaten a whole bag of them. And, and now somebody kind of like, held the bag towards me. I was like, Nah, I don't, I would, I just wouldn't eat that. Yeah, you know, it's a, it's an interesting way, you can watch your mindset, sort of, like change. And really, I think sugar is the last Hill for me, honestly, because I still, if I get some sugar in me, I turn into like, I'm like the sugar version of a heroin addict. I'm just like, someone's like, Oh, look, here's a little candy. And you're like, I'm a little candy. It tastes like cherries. And I put it in my mouth. And then I find myself wandering around the house going, where's that bag, a little candies that tastes like Yeah. Find that bag so that I can eat every one of those things and make them go away. So they stopped tormenting me. You know, it did turn into Gollum pretty quickly.

Lindsay 46:12
And that's like, it really is a lot of your mental status and your mental energy. You have to kind of change the way that you think. And once you round that corner, turn that corner with maybe not having sweet stuff every day, or whatever it is. You You change, and you once you start to feel better, then you you're like, wow, this is this is amazing.

Scott Benner 46:37
Yeah. What do you do for? Do you have a sweet tooth? Do you ever get a craving?

Lindsay 46:42
Occasionally, I always say that I think my sweet tooth is like, just very minimal because of type one. We never really have a ton of sweet stuff in my house when I was growing up. And when I was first diagnosed, it was always like just an occasional thing, holidays or whatnot. So I don't really have a sweet tooth. I have a I love salty foods. So it's the same premise. When you when you eat a lot of salt, or add salt, you start wanting more and needing more to taste. So that's something that I have to keep an eye on. Like you just can't get it like

Scott Benner 47:23
enough is never enough,

Lindsay 47:25
right? You just have like popcorn, I could just put salt on the popcorn like crazy. And it would just it and then you feel terrible because you're like all bloated.

Scott Benner 47:35
And you have to keep escalating to get the same high out of the salt. At some point. You're just gonna start licking the salt shaker and then throwing the popcorn into your mouth. Exactly. Yeah. Yeah, I have a comparison that I'm not gonna make here. But actually, I'm gonna make it and then I'll bleep it out for you. But it's like, right, like, you start. You start with like, Oh, this is nice. The two of them seem to like each other. And then by the end, you're like, Can someone get it? done here? And this just isn't doing it for me anymore.

Unknown Speaker 48:02
It just totally goes off the rails. Yeah,

Scott Benner 48:04
yeah. Lindsey Wait, oh, you hear that played back all bleeped out. And you can't figure out what we're talking about. Only you are gonna get to laugh. Isn't that nice?

Unknown Speaker 48:11
I'm honored.

Unknown Speaker 48:12
I cannot wait.

Scott Benner 48:15
Oh, my God, anyway. Okay, so yeah, I think that I think that what I'm learning and what kind of drove me towards because I have to say like, if you do listen to the podcast, I, I really believe that anybody can do whatever they want. And it's possible that one of you out there is doing something that's really unhealthy for you. But that's your decision. I have no business making that decision for you. I just want you to understand how to manage your insulin while you're making the decisions. You're eating about food. That that's really my, like entire goal about the podcast, right? Yes. But I am becoming more interested in letting people describe the different ways that they eat. Because I realized that there's huge segments of people who are going to eat gluten free and the you know, some people are going to do intermittent fasting, and some people are going to do you know, other ideas. And so I've tried to line up a lot of people, I've had a lot of success years as the first one I'm recording but but I want people to come on and talk about their different, you know, food eating styles, and I don't think of them as diets, really just ways of ways of eating that, that end up being beneficial to you. And, you know, that's it. I just, I mean, it could not have been fun the 10 years you spent, you know, struggling like that. And it's really amazing that you found something that works for you. So I guess like spend a little bit of time here and tell me Is there any impact on your type one before you went gluten free and after?

Lindsay 49:52
Not that I can remember. I don't remember having any adverse reactions before I was diagnosed. Before I was gluten free, compared to after, although I was I was younger and it was quite some time ago, but nothing really stands out to me in great detail. I was diagnosed when I was six and I was doing injections for gosh up until about 2007 when I started on the Omnipod Okay, and I I've always been pretty on top of the diabetes Of course every day is different and a challenge but my parents I'm an only child and my parents really took a lot of time with me when I was little to get me on the right track and make sure I understood how things are important or you know how to handle different things and

Scott Benner 50:49
whatnot. So if even though you were bloated and uncomfortable and and making it what I mismatching is just horrible poops. It's just your your blood sugar control didn't suffer it within that situation.

Lindsay 51:03
No, not that I can remember. Nothing that would would have been really directly related to the celiac being undiagnosed.

Scott Benner 51:11
Okay. Hey, listen, now that you're not gluten free. Do you ever stand out from the toilet? Look in there and go, Oh, my God, that thing is perfect.

Unknown Speaker 51:20
No, you've never thought that like I make the greatest. Now like you've never had that thought.

Unknown Speaker 51:27
Although, you know,

Lindsay 51:28
I'm sure I know. I know people do that. And hey, I am not judging you. You should be proud of what you

Scott Benner 51:35
do. I think people should stand up and celebrate and be like, my God, look at that thing. perfect size and shape. came right out.

Unknown Speaker 51:42
healthy.

Scott Benner 51:42
I'm so healthy. My daughter has a friend Sanchez she calls. She goes, she'll say Mr. Benner did you? Do you have a ghost? And I'm like, What? And she goes a ghost. You know, when you don't really have the wife? I was like, wait, that's what that is.

Unknown Speaker 51:58
That's a great name. It's like, Is that an internet

Scott Benner 51:59
thing? Or did you make that up? You're still wiping though, right? And she goes, Oh, yeah. But you know what I mean? I think I do. Yeah, so awesome. I think I do. It's funny that girls vegan, but, but it's interesting, because some of the way she gets the vegan are less than healthy. And if you made me think of her earlier, when you were talking like, you know, you can eat a cupcake and say, you know, like this wrapped in a piece of plastic that you bought in the grocery aisle that you know, could live through a nuclear war and go vegan. Yeah, yeah. It's very interesting. We're gonna dig into all that. Okay, so run me through a day. You get up in the morning, what do you for breakfast.

Lindsay 52:45
So most common breakfast would be a piece of gluten free toast with almond butter or organic peanut butter. Okay. Sometimes I put some blueberries on top of it. And that's really going to be dependent on what my sugar is. What I'm doing afterwards, so that's really what I eat most mornings. Other mornings, I'll have like, eggs and maybe a piece of toast or I love siracha on my eggs, so that's definitely one of my favorites. Okay.

Unknown Speaker 53:18
And then do I'm gonna go through the whole

Scott Benner 53:20
Yeah, like, do you snack mid afternoon? Do you have lunch? Like what happens next?

Lindsay 53:24
Yeah, so um, I usually eat three square meals a day with some snacks mixed in depending on my work schedule, and depending on my sugar, obviously, I'm lunch a lot of times is a protein shake. So we'll have a protein shake with a little bit of dairy free yogurt and a little bit of frozen fruit and some peanut butter. So that that's, that's launched and that's probably I think that's about between 30 and 35 carbs depending on the fruit and a dinner. I mean, we could go crazy. We had sushi last night. We love steak. We love chicken barbeque chicken, sweet potatoes, mashed sweet potatoes

Scott Benner 54:11
sweet potatoes sweet potatoes all rotten without Of course any cheese or milk or anything like that.

Unknown Speaker 54:19
Yeah, you and you

Lindsay 54:20
can make all of those like really good, yummy foods gluten and dairy free. It just may take a little bit more time and energy but yeah, broccoli, salmon, fish, shrimp, crab legs, we

Unknown Speaker 54:34
we love it do all that stuff. I

Lindsay 54:37
do usually have dessert. And of course, again, it's going to be dependent on my sugar and how late it is and a bunch of other things. Did I work out that day? But we'll have how Gosh, I don't even know. A little bit of a gluten free brownie or part of a cupcake or something like that.

Scott Benner 54:57
Yeah. Hey, listen. You remember when we used to go to the movies? What did you get? When you went to the movies, did you bring something with you? Ah,

Lindsay 55:03
that's a really good question. I usually just get popcorn. Oh,

Scott Benner 55:07
because you didn't have that? Yeah, no problem. Got it. You're not do you find yourself smuggling food into places ever?

Unknown Speaker 55:15
Um,

Lindsay 55:16
I do, I have at times, and in the past, it's actually more so been for dinner purposes. So if we go out to eat, and I want to have some kind of pasta dish, I'd bring my own pasta. But there would have to be a conversation there with with the restaurant or with the cook about using a different pot and making sure they're cooking it in a in a separate pot of water, basically, because a lot of restaurants, they'll just cook all their pasta in the same pasta water. And that obviously would not work for someone with celiac. So

Scott Benner 55:54
because all that everyone can imagine making pasta and there's that, like thickness that that happens in the water. That is I guess the gluten, right?

Lindsay 56:02
Yeah, that's the starch that that comes off of that pasta noodle. And that's a whole other thing. I mean, eating out, there's a risk of cross contamination. Always try and let them know. And of course, you know, a lot of places are just more aware of these things right now. But you have to be super careful. And I'm not going to drive myself absolutely crazy. I'm not going to go in and inspect the kitchen and you know, demand all these crazy things. But you have to really be mindful. And you do have to hopefully trust that these people are doing the right thing.

Scott Benner 56:37
Yeah. Is it? Is it one of those things where you can just tell like an hour later, you're just I don't know, let's say farting in the car and you think to yourself, there's no way they wash that pot?

Unknown Speaker 56:47
Yeah, you'll

Lindsay 56:48
know, you'll just just I really wish I thought about this prior to talking to you. Because I really don't know how else to say it other than just being really uncomfortable. Especially as a woman, you know, if you're going out to dinner, and you're with your boyfriend or your friends and you're in a dress and heels or whatever, and you eat something that you shouldn't have, you're just like, super uncomfortable you want to do is just rip your clothes off and get in your PJs and go to bed.

Scott Benner 57:16
What that makes me ask someone to ask you, what's it like to have sort of a gluten issue on top of your period?

Lindsay 57:24
Um, for me personally, I wouldn't really consider it any different than Okay, guess what it should be? Yeah, I don't think there's any any change. There's only

Scott Benner 57:35
there's only so much bloating and uncomfortableness the body can make, I guess.

Lindsay 57:39
Yeah, there's a Yeah, there's a limit there. You know, I try my best to, for me, exercising is what? What eliminates that stuff? Even if I'm super uncomfortable, I try and just keep moving and keep drinking water. And those two things for me seem to help eliminate a lot of those issues. Yeah.

Scott Benner 58:01
Is there any other physical symptoms? Like I don't know, I'm making things up. But joint pain headaches, or does any of that? Or is it all just pretty much stay in your belly and your digestive tract?

Lindsay 58:13
Yeah, there's a whole there's a plethora of other symptoms that people have. Occasionally through my life, I have gotten them. I of course, I wouldn't know 100% if they were celiac related, or if I had eaten gluten at the time, but the most common other symptoms for celiac would be the joint pain. Absolutely, like an arthritic feeling. People start losing hair. People get dizzy and have blurred vision. And there's also a type of dermatitis like a skin rash that would be caused directly caused by gluten so people do break out and rashes and all sorts of different things. I'm on a bunch of different Facebook forums for celiac and celiac type ones. And I see people asking about all sorts of different things you would never even think of.

Scott Benner 59:09
Well, I'm going to ask you this because I'm in the middle of trying to help Arden with something if I said to you, it feels like your bones are bruised. Is that a feeling you've ever had?

Lindsay 59:18
Yeah, yeah, really? Okay. Absolutely. Or maybe for somebody who, who goes out and likes to party maybe feeling a hangover. I think that's another good comparison. Just just exhausted. Terrible. watery eyes. headache. achy kind of just

Scott Benner 59:37
flew like can't get rested. Yeah, Max deafness. muscles are no,

Lindsay 59:44
I'm not so much for me. But absolutely, I've heard it from all these different patients present with all these different symptoms that seem kind of far out there. But I do think that they are all related to celiac if I'm diagnosed

Scott Benner 59:58
as part of me that thinks I should just put are not an IV drip for a month and the letter stop eating, take her back to like zero and start over again. That did you have to do an elimination diet at first it just cut everything out.

Lindsay 1:00:13
We did our best to just cut everything out. I don't remember. I remember having the conversations with my parents, I remember them going through all of these different foods that we were going to eliminate and that we were going to keep. And I don't remember, like throwing out the kitchen at that time. And you know, starting from zero, but I know that that's what pretty much what we had to do.

Scott Benner 1:00:37
Okay. That's interesting. It really is. I appreciate you talking about this. It's obviously personal. But you were really excited to help and I kind of put the call out I and I appreciate that very much. It's something I just don't understand.

Lindsay 1:00:52
I was just gonna say I'm, I love the podcast, I am somewhat new to it. I think it's been a couple months actually, maybe since Corona started. And being a diabetic for 27 years, it has changed so much of the way that I think about things because you do and I know you've discussed this before you do fall into certain patterns and and just you get complacent with with things sometimes. And it really you've you've helped me, so I'm happy to chat here with you.

Scott Benner 1:01:22
It's very nice. I was wondering if we were going to take a couple minutes to talk about how terrific I was. And this is really a good time for it.

Lindsay 1:01:29
Yeah, you've you've been great. I really do appreciate.

Scott Benner 1:01:32
Yeah, I'm kidding. But thank you. And I'm glad. I'm glad I have to say I'm kidding. For the five people who are like don't understand sarcasm, and they're right now running to like a review somewhere. No, this guy is so full of himself. And he just said that he's great. And I'm like, all right, I gotta get out to the east coast once in a while talk to other people. Lindsey knows she's from right around here. We could probably have done this in person, I'm guessing.

Unknown Speaker 1:01:57
Yeah, yeah, absolutely. Yeah.

Scott Benner 1:02:00
Well, I'm really thrilled that the podcast has been helpful for you. And, and the complacency is something that I find in my own life all the time, where you just sort of you get that drift off, and you're like, Oh, it's only 160? Yeah, fine. You know, and then before you know it, it's three weeks later, and you know, you've got some app that tells you you're a one C, you know is gone up, you know, a half a point, and you're you know, your variability is growing and your standard deviation is getting bigger. And you just think well, what should I do? And you're looking at, I just probably need some more basil here, and then you're done. And it's, you know, something that's, it's pretty easy, just hard to see in the moment. You know, it's one of those. It's one of the macro things where you have to step back and see the whole thing and get out of this minute, two minute, you know, fight that you're in and start thinking about the whole war, I guess, for the

Lindsay 1:02:46
Absolutely, yeah, and I think a lot of it is just really how you're how the human brain handles things. You start something and it's kind of working and you go with it. And then it just continues and maybe it gets worse, and nothing, you can always do better. And that's definitely been brought to light.

Scott Benner 1:03:06
Well, how else right? Could you could you put yourself in a situation where you know that having a slice of pizza is gonna send you into like stomach cramps, and you know, two hours in the bathroom and still the next time you see a pizza, just go Alright, let's do it again. You know, start feeling like Well, I guess this is how my life is. And yeah, I guess it doesn't need to be. Especially if you have beet shoots.

Lindsay 1:03:29
I mean, I there's no comparison.

Scott Benner 1:03:31
If I opened your refrigerator, would I just be like, I don't recognize any of these foods.

Lindsay 1:03:36
No, no, you would you would be I'm sure you'd be fine.

Unknown Speaker 1:03:42
This has a face. What is this?

Unknown Speaker 1:03:45
What is this?

Scott Benner 1:03:47
Oh my gosh, well, I use very nice that your I guess I was gonna say fiance but obviously not your, your, your guy friend, which I'm assuming is what your mom calls them. That boy, it's very nice that he's doing it with you, you know, as much as he can, like, Yeah, I know. You said he has separate foods that are his but but it's it's very cool. And I think that it's um, it's just to have support around this sort of thing. I don't think can probably be undervalued because you probably feel like you probably felt already pretty alone with diabetes, then add this and am I wrong? Or

Lindsay 1:04:25
you're you're right. The support in any situation, diabetes, celiac or anything in life is really just so important. And even not just with him but with with his family and his parents and, and our friends. All of our friends are they know and they're mindful. So it's just nice to know that people it's nice to know when people think about you and maybe go out of their way to get you something or you know, make dinner a little bit more special for you and it doesn't It's just It's lovely.

Scott Benner 1:05:01
Yeah, no, I can see that. Hey, are there people who do a better job with gluten free foods than others? Like you? Sometimes he didn't just like, does your tongue just come out of your mouth and just let it fall out of your mouth thinking like, Okay, this is terrible. Or, like, where do you find a gluten free bakery? I guess I'm saying like, where do you? How did you crack them, there's

Lindsay 1:05:22
a there's a few. There's, there's actually several in New Jersey. There are there's one down south, it's about an hour and a half from me. And there are several up kind of close to the city. And of course, there's a whole bunch of places in the city. So you, I've just found them through talking to people and Facebook. And it's amazing. I mean, I, I will drive an hour and a half, actually, I, I've run a marathon. And after the marathon was on, I had my mom waiting there with a cinnamon bun. But prior to that, we drove an hour and a half just to get a couple of cinnamon buns for the end of the race, because it's just such an exciting venture to have like this gooey, icing covered cinnamon roll.

Scott Benner 1:06:13
See when you simplify your life, small things can be very exciting. And and that's true. That's really cool. Do you see yourself having a breakdown ever? Or do you think this is something you can just easily do your whole life,

Lindsay 1:06:26
it's something that I will do my whole life. I won't ever voluntarily break down and eat something that's not gluten free. Especially now, I am 33. And we you know, not right away. But we would like to have a baby one day and I definitely don't want to jeopardize my health in any way. So this is gonna be this. Is

Scott Benner 1:06:51
it good for you? Well, I think it's interesting to hear you speak and I'm hoping that other people coming on are gonna kind of follow similarly, that you're not a zealot or a lunatic. And you know, because I think I think there are some people could could easily think Oh, you don't eat gluten, this must be a, you know, just a raving loon, you know, and then, yeah, and you're just clearly a very normal, nice person. So

Unknown Speaker 1:07:14
thank you. Yeah,

Scott Benner 1:07:15
that's it. Yeah. Well, you're from Jersey. How could you be a bad person? This is true. By the way. Are you from here? because no one's really from here. Are they?

Unknown Speaker 1:07:22
Oh, I'm from here.

Scott Benner 1:07:22
Oh, I didn't think I was born in New Jersey. I thought we just all ended up here somehow.

Lindsay 1:07:28
We just got lost and ended up here.

Scott Benner 1:07:30
Yeah. Well, I always just think it's a job. You know, like, you get a job and you move to New Jersey or you don't want to live in the city. So you're going to commute? Yeah, I just thought of this as like a holding place for other people. But

Unknown Speaker 1:07:42
yeah, yeah. But I guess no, my

Scott Benner 1:07:43
kids are born in New Jersey. So they're from here. You know, yeah. gotta live with that shame. Now.

Unknown Speaker 1:07:51
It's a good thing.

Scott Benner 1:07:52
No, I actually like it here a lot. I don't I don't. I don't have any trouble with the jersey whatsoever.

Unknown Speaker 1:07:59
No, absolutely not.

Scott Benner 1:08:01
We have pharmaceutical companies and banks. And those circles to make left turns with we have all kinds of stuff.

Lindsay 1:08:08
Oh, yeah. Well, yeah, all of our roles and driving habits are like, first foreign to the rest of the country. Yeah.

Scott Benner 1:08:16
And what about those beaches where the water doesn't get warm? That's lovely. Did we not say anything that you are going to like five seconds from now? When I say goodbye, go, Oh, my God, how did I not say this? Or do you think we did a good job of explaining it to people?

Lindsay 1:08:33
Um, actually, yeah, there was one thing that I did want to want to discuss real quick was that when I was diagnosed, and when I was diagnosed with diabetes, and I know we are you're the podcast has discussed this before. I had chickenpox prior to the type one diagnosis. And the doctors all thought that that was related. When I was diagnosed with celiac, I had been in a stressful kind of life changing and not necessarily negative stress, but a very stressful long term situation. And all of my doctors also felt that that stress did kind of bring out the celiac, it, you know, your immune system was maybe a little bit compromised, and something just clicked and that's how it happened. So I've read that a lot. My doctors have also kind of agreed with that. And I think that's something to just know that that a lot of people say if you're sick, or if you're under a lot of pressure or stress. That may be the cause of some of these things are not the cause but what actually brings it

Scott Benner 1:09:42
out. Yeah, so everyone sit in the middle of a dark room and hum to yourself for the rest of your life. That's it.

Unknown Speaker 1:09:47
Yeah, just just don't do anything.

Scott Benner 1:09:49
No more interacting. Turn the news off to by the way. Oh, please. Yeah, that's it. It is interesting because as we've been working with Arden and she's getting more frequent blood draws is she trying to figure stuff out every once in a while, like her, like, you know, it's like a every No, it's not like on any schedule, but like, you'll see her white blood cells pop up like she's fighting some sort of an infection or something like that. But you don't you don't see it in her in her life like you don't you wouldn't look at her and go, Oh, she's sick right now, or something like that. But she'll have these white blood cells that indicate an infection fight. And then the next time she has the blood draws, everything's perfect again, right. And it's just interesting, you don't know what your body's going through. And, and the way I like to think about food is this, and I'll leave, I'll leave everyone with us. And I'm certainly not the gold standard for this idea. But I'm trying to be just because your body can process it doesn't mean you should eat it. Right? Just because it goes in your mouth and comes out the other side and you're still alive when it's over doesn't make it a good idea. Not all the time. So I'm trying to figure out what those things are for me, and I think everyone should be doing their best to consider what those things are for them.

Lindsay 1:11:01
I agree. I think that's a great way to think

Scott Benner 1:11:03
yeah, go I really appreciate you doing this. Would you hold on for one second, and thank you.

A huge thank you to Lindsay for coming on the show and sharing all that she knows about type one diabetes and celiac disease. Thanks also to Dexcom, makers of the G six continuous glucose monitor and on the pod makers of the Omni pod tubeless insulin pump. I also want to thank touched by type one, you'll be able to find all the sponsors at Juicebox Podcast comm or in the show notes of your podcast player. But if you want Dexcom it's dexcom.com forward slash Juicebox. Podcast my omnipod.com forward slash juicebox and touched by type one.org

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