← Diabetes Connections | Type 1 Diabetes
Diabetes Connections | Type 1 Diabetes
T1D and Celiac: Practical Tips from a Family Who's Been There
00:35:18
Loading summary
Transcript62 lines
- [00:05]
A
This week on Diabetes Connections. When Samantha Merwin found out her son was diagnosed with Celiac on top of Type one, it seemed overwhelming. Clearing out the pantry, replacing the toaster, rethinking every restaurant meal, and then teaching her child to advocate all over again. This week we're talking about life with both type 1 and celiac and the free resources Samantha created because she couldn't find the help her family needed. As she says, nobody should find themselves crying on the floor in Whole Foods because they can't figure it out. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. You've probably heard me say this before, but it's worth repeating. Dexcom G7 isn't just great tech, it's accessible. Dexcom is the number one covered CGM brand and most people pay $20 or less per month. Dexcom is also the leader in CGM connectivity, offering the most connected CGM systems connect to a wide range of compatible pumps, pens and health apps to create a setup that fits your life your way. For us, Dexcom has made managing diabetes feel less overwhelming and more in control. Check out Dexcom.com or your local pharmacy to get started. Welcome to another week of Diabetes Connections. I'm your host Stacey Sims. We aim to educate and inspire inspire about diabetes with a focus on people who use insulin. I know there is a ton in your feed right now about breakthroughs and technologies and new stuff and studies from ADA Scientific Sessions. We had a bonus episode with Dexcom already. Go back and listen to that if you missed it. And we're going to have lots more in the days and weeks to come. But I wanted to share this episode because while there is a lot of great stuff in the pipeline, you know it's the day to day living that oftentimes we need more help with and living with Type one and Celiac is not for the week. I've known this week's guest almost 20 years now, at least through the Internet. Samantha Merwin's son was diagnosed with type one at 17 months old in 2008 and then diagnosed with celiac in 2019. She founded Elbow Bump Kid named because her son Sage had a lot of allergies. He didn't shake hands, he did the elbow bump when he was little and the charity does everything from events to awareness to fundraising and they have a lot of free resources. They have a great free resource around celiac. You're going to hear more about that. You should know that we taped this all the way back in January. That is why we were talking about snow and ice at the very beginning of the interview. I almost took all of that out. But, you know, that is just how podcasting goes. And if you're a longtime listener, you know we're doing things a little differently this year because of all the in person events we've got going on. I'm off to Chicago this week, Boston next week, so we're taping and holding a lot more. So I'm really happy to share this episode with you. My conversation about celiac and T1D with Samantha Merwin right after this. Right back to our conversation. But first, Diabetes Connections is brought to you by Omnipod.
- [03:19]
B
Did you hear the pod drop?
- [03:28]
A
Did you know all the sounds used to make that song come from a sight change with the Omnipod 5 automated insulin delivery system? Pretty cool, huh? With Omnipod 5, pump site changes are simple. The pod lasts up to 3 days, 72 hours, and to change it, you just fill up the pod with insulin, place it on your body, tap a few buttons in the Omnipod 5 app, and you're ready to go. There's no tubing to prime like with traditional insulin pumps, and it's virtually pain free, so you never have to see or handle the insertion needle. Want to try Omnipod 5 for yourself? Request a free Omnipod 5 starter kit today by visiting omnipod.com diabetesconnections. Terms and conditions apply. Eligibility may vary. Sam Merwin, welcome to Diabetes Connections. It's always fun to talk to a friend and somebody who has great information. So thanks for coming on.
- [04:21]
B
Thank you for inviting me.
- [04:22]
A
Yeah, this is going to be fun. How are you doing today? You staying warm?
- [04:25]
B
I am barely staying warm. Thank goodness for heated blankets. That's all I have to say.
- [04:30]
A
Oh, man, that's great.
- [04:31]
B
Connecticut with 18 inches of snow, It's. It's a little cold here.
- [04:34]
A
All right.
- [04:35]
B
So how about you? How'd you fare?
- [04:37]
A
Well, we're talking right after that enormous ice and snowstorm that went through the Northeast and all the way the southeast through Texas. In Charlotte, we got a lot of ice, but we were lucky. We had power, we had heat. We just couldn't leave the house for about two days, which is kind of nice sometimes.
- [04:50]
B
Not bad things. No complaints. Back to Covid dates, right?
- [04:54]
A
As long as we have heat. You know, like I said, we've known each other for a very long time. Our kids were both diagnosed with type one when they were very little. But remind me, when was your family, like, introduced to Celiac. Was that part of the initial diagnosis of type one?
- [05:06]
B
Yeah. No, it was not. So Sage was diagnosed with type one as a baby at 17 months old. We caught it, you know, within, you know, maybe just a few weeks or so. So it wasn't a tragic diagnosis, but it did definitely spur 18 years now almost of Sage living with type one. Sage was diagnosed with celiac in 2019. He was complaining a lot of some stomach pain. And, you know, we honestly in the very beginning, didn't think anything of it because six months before, he had the annual celiac test that we all get for our children. And it was negative. But I knew that it was something serious. We were on a cruise to Alaska and he was lit. The cruise was something he had asked for for a while, and he was literally in the bathroom, like, half the cruise. So I called the doctor right afterwards, and they're pushing me and they're like, it's not celiac. He was just tested. And I'm like, I'm telling you, it's celiac. So I pushed for the celiac test and he was positive. It was actually a very lucky time for our diagnosis. Right afterwards was the, at the time, JDRF. Now Breakthrough T1D Children's Congress. So they had gluten free options. And then right after that, we pivoted right to friends for life and they had gluten free options. So I came back home and I'm like, all right, I gotta cook for this kid.
- [06:15]
A
So when you come home to something like that, like, I remember the type 1 diagnosis was like a clear the pantry event, because you're counting and you're spreadsheeting and you're thinking. But with celiac, it's not only a clear the pantry, is it a clear the kitchen situation? Toasters, pans, things like that?
- [06:31]
B
Yes, yes. So, I mean, it clearly also depends on your family. Some families make different choices than others. And there's no one right or wrong. The thing that you absolutely have to make sure is that your child or you, whoever's diagnosed with celiac, because it doesn't have to necessarily be the T1D in your family is safe. Right? So you have to make sure that there's no cross contamination for that person with celiac. So for some people like us, we chose. I took the kid away for a few days. I was already at Children's Congress, and we cleared the pantry, all the gluten was gone. You know, made a pile of things that we can't clean. There's things that can be cleaned Right. And you know, you just degluten them. But there's things that can't be cleaned. You know, it's impossible. Like a, like an air fryer, toaster oven, stuff like that. Put it all in a pile and actually gave it to a young adult moving into an apartment. Some of it, some of it we just donated to social services, but we got rid of everything and we changed to a gluten free house because Sage was really symptomatic. So we just didn't know what else to do other than to try to help him. We still have a small gluten area in our kitchen. We don't cook with gluten, but if I'm bringing home leftovers from like being a night out with a friend, I've got a little, you know, a separate toaster oven to warm it up. But I eat it on paper with plastic silverware. So we have actually a guide that we created through my nonprofit Elbow Bump kit that, that gives, if you want to go completely gluten free, it gives a list of the things that you should replace. Right. I mean, there's some things that you can wash, like plates and silverware, but there's things that you can't. Like baking pans that have the old cookie grease on them. Some of the mixing bowls that have like the cuts in them because you've stirred it like a thousand times. You know, there's things that you can replace and then there's things that you can clean.
- [08:11]
A
Yeah. Before we go any further, and you've already mentioned it, we have to talk about Elbow Bump Kid. Just briefly explain where that name came from and what you all have done, because this has really grown.
- [08:22]
B
Elbow Bump Kid is a nonprofit. We're based in Connecticut. Uh, we started in 2019. So now we are in year six of being a nonprofit. We start small. The original intent was to help some families in Connecticut with, you know, helping them connect and, you know, helping a couple of families each year go to the Friends for Life concert. That's how we started where we are now. You know, we've expanded and for the past several years, we run monthly events for families with type one. So every single month, there's something for a family with type one to do here in Connecticut. Whether it's a caregiver, whether it's for kids, whether it's for our girl power program. There's something for everyone throughout the year as well as the online resources for T1DS throughout, no matter where you live, a diversary card program that's National. We have a college program where we have scholarships for college students that live in either Connecticut, Massachusetts or Rhode Island. That's every year in the spring, actually that's opening up on March 1st, coming soon. We have a friends for life scholarship program. We also have a really cool program that we launched last year for newly diagnosed or currently diagnosed T1DS in our area that if you need some of the non pharmacy supplies that they don't give you a diagnosis, think spy belts, food scales, Frios, stuff like that. We actually supply those to families that can't afford them. And then finally, the other one I'll mention before, Celiac is the girl power program where we have girls age 6 to around 16 or so. They gather every quarter and they have events that are just for them. So it's just the girls parents are typically separate, they hang out, they play games, we subsidize it all and we just inspire connections. And every, every time there's a girl that's in charge of picking the idea for the event, picking the snacks, and then we just help them do it and then they run it.
- [10:05]
A
That's great. Okay, so why did you decide to have a celiac guide? Is this a need? Did you just not have it for yourself?
- [10:13]
B
Yeah. So when we were first diagnosed, and no discredit to any of the medical professionals that might be listening to this, we didn't find that the information that we were given was really tailored for a patient with type 1 diabetes. It was tailored for a patient that was being diagnosed with celiac. And Sage also has a lot of food allergies too. Right. Which clearly is different and unique. But still, any of the resources that we were given were not tailored to type one. So we started asking around other families were being diagnosed, looking in the forums. You know, there's an entire Facebook group empowering parents of kids with both celiac and type one. And people are asking the same questions over and over because they don't have the resources they need in order to manage both diseases together. So I started doing some research, some random questions out on social media. And then I proposed a project to my employer and just said, I think there's a need here. And you know, we have a program at my job, it's a fellowship program where you can take a couple months off and create something to better the community, something medically related most of the time to better the community. So I proposed this. And you know, all the researchers that we found out there, there was nothing out there that helps families that's directly you know, diagnosed with both. Whether they have one first and then the other, it doesn't matter. So the resources that we created targeted families that already have type one that get diagnosed with celiac. But it could easily be the vice versa as well, because we created a companion T1D guide as well. We had some random resources out on our website for T1D, but we really put it together into more comprehensive guide. Kind of like a start here, and then, you know, when you're ready, go through it. Here's your camps, you know, here's your clinics, here's your mental health professionals, et cetera, just to try to walk them through the things that they need. Because it's really. It's a journey, not a destination, right? So we couldn't find anything. We had people searching everywhere. It seems that there's a few hospitals that might have something specifically for their patients, but there's nothing publicly available to really help guide that patient. So I said, all right, well, why don't I create it? Right? So famous last words, though, right? I know, I know, Stacey. So that was. I know how much work it took. I definitely bit off a little bit more than I could.
- [12:16]
A
No, no, you've done great.
- [12:17]
B
But thank goodness for all the. The volun that I had, and a researcher, Connor Perkinson, who was absolutely amazing and really helped dig up a lot of the resources for me. I had people proofing it. I had people translating it to Spanish. Really a big partnership. And then the, you know, the celiac organizations that are out there, you know, I sent it to them to make sure they're aware of it for their T1D families that might come to them, you know, and say, hey. And so that way they're aware of the resources that are available, not just for families in Connecticut with the program, part of the project, where we'll provide them with some kitchen supplies if they can't afford them, but also, you know, just for the resources, because it's national, you know, we have doctors that are using this in all areas of the country, not just in Connecticut.
- [13:02]
A
Well, and it may be obvious from everything you just said, but to really get the point across, this is written by you, a layperson, but approved by medical professionals.
- [13:12]
B
It's a labor of the community. We had basically a project team. I put together a project team of community members. Some of them had nothing to do with T1D in general, but there was a consultant on there, a researcher, some T1D families, some celiac families. And then in the end, once everything was all done and Ready to go. It was sent to a medical professional for sign off. They had very few changes, which was very nice. And anything they said to change, I changed. And then, you know, we gave it the stamp of approval. We do review it monthly, and we sent it out to other doctors and just say, hey, this exists in case you want to use it for your patients here and there. But we feel pretty strongly that it's accurate at this point because we did have the medical stamp of approval from our renowned celiac medical professional. So.
- [13:59]
A
Excellent. Excellent. Yeah. By you, I meant you as the point person, which sounds like an incredibly collaborative project.
- [14:05]
B
And that's. I knew what I wanted it to be, but I'm one person and one person can't do it, and I wouldn't have been able to. Right. There was a lot of other things I needed to do with this. With the kids Corner, we published a kid's book to explain celiac to a little kid. Everything's free, by the way. This is not. There's no gatekeeper to it. You don't have to enter your information onto our website if you don't want to. You go onto the celiac or the T1D page, you pull the resources, and they're all free. You can enter your information if you want to receive the updates. When we have them, we'll email out and say, hey, by the way, this has now been updated. Or, hey, we have a new worksheet for your kid, but you don't have to. It's all free. And that was the intent of it, was to make it accessible to everyone. Because you can have this great book and this great program out there, but if you have to pay 99, 95 for it, then oh, my gosh.
- [14:52]
A
Right, right. Who's gonna go?
- [14:53]
B
It's just not accessible to the masses. And that was not the intent. The intent was never for us to earn anything from it or to fund our nonprofit from it. It was to give back to the community.
- [15:02]
A
So through your experiences, both living with celiac in your home and doing all of this, are there any unique challenges when it comes to type 1? And it may sound really obvious, like, of course, Stacy, we have to carb count and we have all this other stuff, but I'm just curious, you know, we don't have celiac. I do eat gluten free because I have a sensitivity and I feel so much better eating gluten free, but I don't have to worry about, you know, casual cross contamination and stuff like that. So I put that to you Just, is there anything unique to type one in celiac that you found from the very beginning? They mean everything to you and that means you'd do anything for them, especially if they're at risk. So when it comes to type 1 diabetes, screen it like you mean it. Even if just one person in your family has type one, you're up to 15 times more likely to get it too. Screen it like you mean it, because one blood test could help you spot type 1 long before you need insulin. Talk to your doctor about how to screen for type 1 diabetes because the more you know, the more you can do. So don't wait. Visit screenfortype1.com to learn more. Again, that's screenfortype1.com.
- [16:09]
B
Yeah, there is. So, I mean, like you, I tend to eat more gluten free because my house is gluten free, right. If I'm out with a friend, I will eat gluten. But I have to tell you, I never feel like super fantastic afterwards, so I really lean towards the gluten free. But for type ones, yeah, there's definitely a few things that stand out for how to manage type one and celiac together. You know, the first is really important and it's often the biggest surprise to families because again, it's not usually mentioned, but most of the gluten free foods have more carbs. So you know things that you're used to swagging, right? You know, and you know it's swagging. For those of you who don't know what it is, it's a guess we usually most type one families do guess. If you're out to eat or a lot of times once you've been doing this for a lot of years, you're not necessarily reading the labels all the time and you're guessing well, you're going to be guessing wrong if it's gluten free because most of the gluten free foods have more carbs. So I would say that's number one. Number two is the availability of gluten free snacks for lows, right? Because typically if you're out and about and your kid's low, and let's say you already went through all the low snacks in your mom bag, right? And you forgot something, you got to find something gluten free for that low, right? So you have to be a little bit more prepared than you usually would. And that's not just for lows, but traveling in general. Some airports don't have gluten free food, right? So you have to airports are the worst. Right. So you have to make sure that you bring gluten free food and snacks with you wherever you go, because you have to be prepared for your type one to have a low blood sugar. I would say you're going to be reading a lot more labels as well, because you have to. You're not just monitoring for carb counts anymore. You have to monitor for gluten. And gluten can be said in a bunch of different ways. Right. You have to look for that certified gluten free label. And there's a lot of different ways that it could say certified gluten free, you know, whether it's from beyond celiac or gluten free watchdog or whatever. But there's something that says certified gluten free. Um, and if not, then you have to really do some research to make sure that it's safe. I would say that the other. I mean, like, clearly this goes on, right? So there's a couple of. A couple of other things. If you're exposed to gluten, you can potentially have most of the time, from what we've seen, low blood sugar after accidentally get gluten, as we call it. Right. Because your body's going to absorb glucose at a slower rate. So you're just gonna have to monitor a little bit more closely. And then again, so before diagnosis, if it's untreated, Celia, that can increase the risk of, you know, the number of lows that you have. Right. Um, so I would say those are the top. I mean, clearly we could have this conversation for a while.
- [18:41]
A
No, I've never heard of that.
- [18:42]
B
Those are the top. Yeah, those are the top items that we found that, you know, really we wanted to get out there to type ones. Know that, you know, if you've always guessed your carb amounts in the past, you know, take a step back and actually you're gonna have to just relearn that again. You know, it took us a little while to really relearn how much it was going to be for a gluten free ice cream cone, a gluten free roll, you know, whatever it was that was gluten free, the carbs were different and they were higher. Wow.
- [19:07]
A
I'm curious too. So Sage was diagnosed very young and is now a young adult. Independence and type one looks very different. Family to family, person to person. But it also looks different with celiac. What's it like teaching your child to not only advocate for themselves and manage type 1, but do the same with celiac?
- [19:27]
B
Yeah, it's tough. Sage is 19 now. Just turned 19 last night, as you know. I mean, type one as a baby, you know, being diagnosed with type one as a baby was different, right? Because through the years he picked up things as he wanted to. Right. You know, he would grab the meter away from the nurse in first grade and be like, no, I'm doing it in fourth grade. He's like, I'm not going to the nurse anymore. You know, just somebody look at me when I'm putting in the numbers, make sure it's right. And by fifth grade, he was pretty independent because he just wanted that independence. He didn't want to leave class and be different. So the nurse was more of a supply stop for us. But through the years, you know, we would continue to remind Sage. And even when he was going for college, I'm like, remember, you still need to make sure that you're, you know, you're safe and you're monitoring your lows and you need to stop a test if you're low. Don't just try to push through it, because that's dangerous. And I think being diagnosed when you're young as a baby, like, you know, like you and I, it's a little different. Being diagnosed with celiac at age 12 was tough. I don't sugarcoat our story at all. 12 is a tough time. You're going into your teen years, you're going out to eat with your friends. They're picking restaurants sometimes that they don't realize aren't safe. And you're sitting there at a diner with 18 kids after drama rehearsal and you are drinking a glass of water because there is nothing safe for you. My kid has made those smart choices because he's a very symptomatic celiac and he does not want to be sick if he gets glutened. If we're at a famous sandwich shop that is typically safe for celiacs, and every so often you might hit a location that doesn't use the gluten free knife and they use the other knife. Sage will be very sick for three days. And I mean dreadfully sick. The entire, like his entire life just stops. So he has a purpose in life to avoid gluten at all costs. And whether that means that one day he's eating a bag of potato chips for dinner because that's all that's available near his workplace, then that's what it is to keep himself safe because he will get very, very sick if he has any gluten. So I feel like sometimes it's different for There are families, many of them, where their kids aren't symptomatic and they might not make the same choices as Sage. So it's different, Right. And you don't want to harp on them and say, hey, do you know what's going to happen to your organs in 10 years if you don't do this? Right. Because that's not a conversation that any teenager wants to have with you or with themselves for that matter. But it's really about making the right choices with them. We have seen that they will emulate that later. And you know, giving them choices, Right. Like I've always said, make the smart choice to keep yourself safe. Right. I mean, if it's, if you're starving and you have to treat a low and the only thing available is junk, eat the junk. That's what you have to do, right?
- [22:03]
A
Yeah.
- [22:03]
B
But it's all about being safe, making that safe choice. And now at this age, he has advocated for himself and can say to friends, you know what? No, like, we need to go to a different place because there's nothing here I can eat. Right. So, you know, I've seen him verbally do that when I've overheard phone conversations or they're planning outings, you know, oh, we have to plan around making sure there's a gluten free restaurant for lunch or dinner. Sometimes it's just having it under your belt. The initial diagnosis is somewhat tragic. It's really the death of the life you had before. Right. Because it's just everything changes and you have to relearn where you're gonna go switching out your favorite foods. One of the guides I created says, okay, did you used to eat goldfish? Now you're gonna eat made good cheddar crackers that you used to eat chicken tenders. Now you're going to have Purdue gluten free chicken tenders. And finding those new favorites is probably one of the hardest things that you have to do at diagnosis. Making sure that you ease the burden of the diagnosis for the celiac, no matter what age. If you look on any of the social media groups out there, some I'm in, some I help admin, you know, that's kind of the hardest part. What should my kid eat now? How am I going to cook for my kid? And getting them some help along the way is like really imperative.
- [23:15]
A
I've seen a big change. Again, I don't have celiac, but I've seen a big change even since I started eating gluten free of how many more products are available but how much more the public seems to be more accepting. It was almost a joke. And see people still joke about it. It's this weird thing where it's like, oh, you're so sensitive. Like, gluten free is a diet fad. It's like, it's so strange. But that is getting better. Is that one of the things that's hard for you all? I mean, you're like us, you're very outspoken family. You're not gonna let that bother you. I know, but do you get that?
- [23:45]
B
Yes. So one of the things that we do say in our longer guide is, you know, stressing if you're going out to a restaurant that you're gluten free. Not by choice. Right. And the way that we say that is we don't say that it's an allergy because that's a miscommunication. It's not an allergy. Right. We say to treat it like an allergy. If they don't seem to understand after a few talking points, we say treat it like an allergy, but it's not an allergy. Right. We want to make sure there's no cross contamination, but we really just tend to say it's gluten free, but not by choice. We have celiac, and most places don't know what celiac is, but some do. And especially if you go overseas or to, you know, certain areas of the country just have like a conglomerate of gluten free restaurants. Rhode island is one of them. Sometimes we'll literally just drive up to Rhode island for breakfast, breakfast, lunch, go get gluten free pretzels. You know, they have like, Rhode island has like amazing gluten free choices. And some areas of the country do, and some areas of the country don't. So we say it's not by choice. We can't have any gluten. We can't have any cross contamination. And let us know if that's a problem because we'll go find someplace else.
- [24:49]
A
Yeah, that's what you have to do. And we don't talk about mental health enough with type one. So let me throw this out there as well. I mean, the stressors on the family, the stressors on the person. I know you have information in the guide too, but can you touch on that for yourselves? I mean, it's gotta be very hard.
- [25:04]
B
Yeah, I mean, it is. I will say that. Because again, you know, Sage, being diagnosed with T1D as a baby, it's the only life we've known. I don't remember life before. Before T1T. And, you know, yes, some families can say you're on autopilot with it, right? And then there's days when you're not. Right. There's a sick day. There's, you know, very recently, we were walking in Chicago and, you know, we were talking about what we're going to do next and say, just like, we're going back to the hotel. And I'm like, why? And he holds up his tubing and it was so cold, and he hadn't, like, had it against his skin that the tubing just cracked. And we're like, all right, Type, you know, life takes a sideline type.
- [25:38]
A
There you go.
- [25:38]
B
Type 11 for like, a couple of hours, right? So that's a mental health impact, because we were going to do something else, and then we're not. And I feel like there's not enough resources out there for the emotional support that you need for the additional diagnosis of Celiac 2 because the two together are, as we've talked about, are difficult to manage. So what I would say to the family that's managing this is recognize that, right? Like, I knew that it was an impact on our family, and we just take the time to let the person diagnosed with celiac participate in the food choices, right? Like, say, okay, I want this. Let's find it. I mean, there's some things. In six years, we haven't found a good sub. Four croissants. Unless we're going to fly to San Francisco every couple of months. San Francisco has great croissants.
- [26:20]
A
Oh, my gosh.
- [26:20]
B
But, like, getting them shipped. I know.
- [26:21]
A
When am I going there?
- [26:22]
B
Exactly. Getting them shipped is ridiculous. So, like, recognizing that, you know what? We miss croissants. And it's not like a stupid thing. We used to eat them all the time, and now we can't. We talk about that sometimes and we have that conversation. And that's important because we're supporting each other. It affects us socially, right? Because it's not just sage with friends. It's if we're all going out as a family and we're visiting our family in Chicago and they're like, oh, let's go here for dinner. And I'm like, okay, we got to pull the menu. We got to make sure. Okay, is it good for gluten free? I got to call, make sure. It's good for the nut allergy, too. And sometimes it's just a lot of work. And so a family be like, oh, I'm already managing type one. It's Easy. You know what the celiac sometimes can be. It's just that extra burden that you don't need. But you'll find people, closet Celiacs, sometimes friends, community members, coworkers who are going to understand and they might be willing to be educated about it and help you find other resources. I know I've seen that quite a bit that happened with us. I know I made a social post in the very beginning because I was super overwhelmed. I know me overwhelmed, right? I was at the first celiac diagnosis. I could probably pull the post in 2019 and I was like, help Sage eats like these things. I don't know what to do. I walked into Whole Foods, a loaf of bread was $8 and I sat on the floor and cried. And all the people in social media I made a public post were giving me tips on what brands and all this. And you know, two years later I was back at that same Whole Foods after Covid and educating them on what to do if they have a newly diagnosed celiac family that asked them for, for help and support because I could have used that that day, you know. So our local Whole Foods is great and they have been very, very supportive of both our nonprofit and the celiac community. And I've educated them a couple of times to know what to do if they have a family come in and say, what should I buy? What should I get? You know, because their stuff is spread out all over the place. And I've gone to all the grocery stores in New England actually and made a list of where the gluten free, the safe gluten free food is spread to try to help families navigate. Because I'm not the only person that has had that story where you go into the grocery store and you go right back out because it's so overwhelming and you don't know what to do. So I've made it a little bit easier in the grocery store guide that's on the website on the Elbow Bump Kids Celiac Resources page, where for New England at least, you know, here's where it is in the stores. But making sure that you reach out to others. And even if it's people that might not necessarily know how celiac works in general, they have to be patient with you and you probably are going to need to explain it to them quite a few times as well. We have family members, friends, whatever, that just don't understand. It's not something that was present in some of the older generations. Right. We are better at diagnosing it now. So there's A lot of impact out there where people just don't understand it. So making sure that you have the resources to explain it to them, whether you're grabbing our guides or something from the National Celiac association or beyond Celiac, just making sure you explain it to people, you know, simply, I can't have it. It's not an allergy. But it's like an allergy. I will get sick. We need to eat here and here instead of here. We need to eat this and this instead of this. If you're cooking for us at Thanksgiving or Christmas, then we either need to bring our own food or we need to make sure that it's safe and you're not cross contaminating, you're not using the same pan, wooden utensils, stuff like that, things that can't have any gluten. So it's work, it's additional work. It's an additional mental load. But in time, you learn how to navigate it just like you do with T1D until the next diagnosis.
- [29:54]
A
Okay, listen, before I let you go, one of the things I'm doing this year is, and I didn't give you a heads up on this so you could take a second, but I'm asking my guests to shout out a diabetes organization that made a difference to them personally. Now you run a diabetes organization so you can shout out Elbow Bump Kid. But I'm curious if there is another one that you would like listeners to just kind of think about or know more about.
- [30:18]
B
There's, I mean, there's quite a few we recommend.
- [30:19]
A
Oh, yeah.
- [30:20]
B
I mean, yeah, yeah. I mean, like we recommend quite a few. I have a list.
- [30:25]
A
You have a list? Well, it's tough because you refer people all the time.
- [30:28]
B
I do. Clearly. We, you know, Elbow Bump Kid does help people nationally and locally. Breakthrough is a national, you know, non profit that is our gateway to, you know, a better life for our kids with Type one. But then there's also the other organizations like you're just my type, Touched by Type one, all that, that are trying to do the same thing on a different level in different areas, gathering community members together so you can make connections to help you through the journey. So I feel like all the diabetes nonprofits that are trying to do that, whether it's locally, like Touch by Type one does in. In Florida or nationally, like you're just my typist trying to do in various Cal. I think she's in California, New York and Florida. Anybody who's trying to gather community members to make connections to help them Navigate the journey. I mean, kudos to all of them.
- [31:19]
A
Excellent.
- [31:20]
B
Yeah.
- [31:20]
A
And I'll, you know, I'll put myself in there.
- [31:23]
B
Yeah. I mean, that's exactly it. Stacey is like anybody who, you know, because I wouldn't, you know, our nonprofit wouldn't exist if what we did actually was happening before we did it. And it's not right. It wasn't. We started it. And we have quite a few cool programs out there that others have tried to like. We have conversations with people. Hey, take our low blood sugar kit. I actually just made a template for it the other day, because I'm not going to geek keep any of this stuff if it helps somebody. You know, we talked to a nonprofit in Iowa, saw our low blood sugar kit event program on social media and was like, how do you do that? What do you put in it? So I walked them through it, showed them a kit and everything. And then just the other day, we had a little time, and I was like, all right, let's make a template. So if anybody else asks, we'll just send it. We're just gonna put it on the website. Make your own little blood sugar kit event. You could do it in every state, and then you supply families with it, you know, for back to school and everything. So that's awesome. I'm not a gatekeeper type. We're in it to help people, and that's always why we've been doing this.
- [32:25]
A
Okay, so last question for you. Why do you keep doing it? Are you still excited about it? It's been a long time.
- [32:31]
B
I know. So we've been. I have personally been volunteering for Breakthrough or any other diabetes nonprofit, you know, for many years. You know, at least 10, definitely more. I mean, why? Because there's still kids that are getting diagnosed, like five year old Danny, who gets diagnosed and needs to meet another five year old near him. And I feel good about that when I see them connecting at an event or they come up to me or they share on World Diabetes Day. You know, what's the most important diabetes organization? Oh, Elbow. Mom. Kid. We love hanging out with them. We love their events. I love hearing that we have helped and impacted families. Am I going to be able to do it forever? I mean, eventually I'm going to retire. Right. But, you know, I've got people right behind me. You know, Sage will be carrying it through. He's already expressed that he's going to continue it. Yeah. You know, I've probably got about, you know, 10 or 12 years till retirement. And after that, Sage is going to carry through the mission until we don't need it anymore. Because, you know, our ultimate mission is to connect families and help them thrive with the diagnosis and that no family is ever alone.
- [33:36]
A
Well, Sam, thank you so much for joining me. We'll definitely link everything up so people can find all the stuff from you. Okay. I really appreciate you spending the time, not just here, of course, but all the time you've spent on all of these projects making a huge difference. So thanks for doing that.
- [33:48]
B
Hey, that's my goal. That's my mission. Thank you. Thanks for inviting me and thanks for spreading the word.
- [33:58]
A
Of course. More information Links to her guides links to Elbow Bump, Kid everything over@diabetes-connections.com where every episode has its own homepage. I will be seeing Samantha at Friends for Life in July. That is the next big summer conference. This is the Children With Diabetes Friends for Life conference that happens every July in Disney World. I'm hoping to see a bunch of you there. We will have a table as usual and doing some fun stuff this year, so reach out if you're going to be attending. I think I've gone to this conference since 2013. It's always a lot of fun. I always learn a lot. And the best part is connecting with everybody and seeing everybody in person. Especially because I didn't go to ADA this year. I was covering it virtually, so just too much going on to get down to New Orleans. But I'm looking forward to seeing a bunch of friends and meeting a bunch of new ones in just a couple of weeks. Thanks to my editor, John Buchanis from Audio Editing Solutions. Thank you so much for listening. I'm Stacey Sims. I'll see you back here soon. Until then, be kind to yourself.
- [35:04]
B
Diabetes Connections is a production of Stacey Sims Media. All rights reserved. All wrongs avenged.