#1957 You Just Need to Move On
You Just Need to Move On
Kelly's son was diagnosed with type 1 at five. For a year and a half nobody would retest him for celiac — until a stranger's comment on a Facebook post and a nurse practitioner's cell phone number changed everything.
Jump to a moment
- Two diagnoses, and only one of them got taken seriously. Kelly's son Cooper was diagnosed with type 1 five years ago, at five years old, after weeks of stomach pain that came to a head when he got out of a hot tub. Celiac followed — but the path to it took roughly a year and a half of vomiting, unexplained lows, and being told there was nothing more to look for.
- The answer came from a stranger in a Facebook comment. After a nurse told her to move on — her exact words — Kelly kept posting about what she was seeing. Someone in the Juicebox group asked whether she was sure it wasn't celiac. She had been told no once and had filed it away as settled. That one comment is what got him retested.
- A cell phone number was the other half of it. Through her son's elementary school principal, whose own son has type 1, Kelly was pointed to a pediatric nurse practitioner who handed over her personal number and said to call while it was happening. Being able to report symptoms in real time — rather than describing them weeks later at an appointment — is what finally got the bloodwork ordered.
- A seizure changed her. On a split long-acting dose, at around 160 and with no fast-acting on board, Cooper turned abruptly and seized. Kelly describes it as the thing that set her back for months and also the thing that ended her willingness to accept an answer she didn't believe. Looking back, she thinks he may have needed less insulin all along — because he wasn't absorbing.
- Her advice is about what a doctor's “no” does to you. Scott names the mechanism: whatever a clinician tells you becomes doctrine in your thinking, so a wrong “no” gets permanently subtracted from your list of possibilities. Kelly's version is simpler — if something doesn't seem right, keep asking, keep searching. Cooper now feels better than he ever has. None of this is medical advice.
- Juicebox Podcast Facebook group — The private community where the comment that changed Kelly's course came from.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed.
- Touched By Type 1 — Scott's last in-person event of 2026 — free tickets, with Jenny Smith and Erika Forsyth.
Every word of the conversation
Cold open & sponsors0:07
Hello, friends. Welcome back to the Juice Box podcast. Nothing you hear on the juice box 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. Hey.
Head out to t1dexchange.org/juicebox and fill out the survey. And if you'd like to do a little in person thing, my last in person event for 2026 is at touchedbytypeone. Go to touchedbytype1.org. It is not too late to get your absolutely free tickets to their fantastic event in September. Touchedbytype1.org.
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Kelly, and a thirtieth anniversary2:27
I am Kelly, and I am a caregiver to a type one diabetic and celiac.
This is your child, this this person you're giving care to?
Yes.
How many children do you have, in total? Two. Two. Are you, wearing a headphone with a microphone boom arm on it?
Yes.
I could tell. Could you move it a little farther away from your mouth?
Yep. And I wasn't sure if that was better or the one that's on the cord.
No. It sound it sounds really good. It just you're I'm getting a little bit of Too much. You don't want me to tell you what I'm getting. Like, right, like, like, I hear wetness in your mouth once or twice.
Oh, interesting.
Yeah.
So It's not but it's my hair. My hair is, like, right there.
Is it is your hair touching it?
Possible. Not anymore.
Good. Well, then let's leave it like that. Okay, Kelly. By the way, thank you for being Kelly on my thirtieth anniversary.
Yes. That was funny. I remember hearing about your wife's, name Yeah. Way back when and being like, aw.
This is nice. I can pretend I'm not ignoring her on her anniversary I'm talking
to you. Happy anniversary.
Thank wonderful. I did flowers. Kept it simple. Mhmm. Considered, a necklace that was pearl and diamond because, apparently, the thirtieth anniversary used to be diamond, but now it's pearl or used to be pearl, but now it's diamond.
One or the other. But I can I can I share with you really quickly? How how how long have you been married?
This will be our sixteenth year.
Okay. Very nice. Congratulations. I I everything I looked at to get her didn't seem big enough. Like, I kept I kept thinking, like, what conveys, like, how I feel about being married for thirty years?
And everything just felt, like, trivial, like, when I looked at it. Like a piece of jewelry, you know, some sort of a thing that I don't think she actually probably wants, a thing that's gonna get put in a drawer or something like that. And I thought I I and I just couldn't find anything that felt as big as how I felt about her. So it's
That's good. Thirty years later.
So instead of instead of getting her something, I told her that. And I said, I I do think you would really like, like, one of the one of the pieces of jewelry I saw. I think you would like it, but I we should go together and look at it. And she was like, that's a good idea. I was like, okay.
So I think we're gonna do that.
My husband and I are so different. I remember the first year, I think he was, like, panicked. And I said, listen. If there's something I truly want, I'm just going to say, hey. I would like to get this for our anniversary, for my birthday, for Christmas.
I think he thought he had to get cards and stuff like that. Mhmm. But what we ended up doing was taking a picture of a card in a store and then text messaging it to each other instead of actually purchasing it. So my husband's been let off the hook multiple times in our sixteen plus year, you know, relationship, and it's worked for us. Yeah.
I've never thought, like, you forgot about me. You know? And now that we have children, you know, for birthdays and things like that, I I always look to him to say, like, you know, what can you do to show our boys that this is how you should treat somebody that you truly care about and things like that. So he includes them a lot more. So we do it a little different.
We don't get, like, a single gift.
Like, hey, guys. Let's go to the Walgreens and find a nice card to take a photo of to text your mom. Have you ever, in sixteen years, caught him reusing an image that you know he didn't go out to text from the store?
No. And after about five or six years, it kind of faded. I just recently started again. I will say with our journey with our type one diabetic and and celiac kiddo, it sort of put a lot of things that we focused on in life on pause. But we've just started to kind of, you know, do it again.
Diagnosed after a hot tub6:09
But
It's nice. Yeah. Well, how long ago was your son diagnosed, and was he diagnosed first celiac or first type one?
So five years ago, as of July, he was diagnosed with type one first. Celiac followed, and that's, where our story got a little tricky.
Okay. Well, tell me a little bit about the initial diagnosis, though. Is it something you saw coming, or did it did it kinda knock you over?
So we had no idea. We don't have any other type one diabetics in our family or anybody, you know, in past years that we could have said, hey. We're starting to see symptoms. We did have a neighbor who was recently diagnosed, and I remember listening to their diagnosis and starting to put two and two together. That would have been probably about a year before his diagnosis, But ours ended up being a lot of stomach pain and just, it really turned into something when he got out of a hot tub.
We had just moved into a brand new house. We had a hot tub in our backyard, and he got out and he was crawling across the floor and said, you know, I I can't do that anymore. Every time I get out of the hot tub, I feel horrible. And at this point, he was six, about to turn seven. So he was young, and I found that kind of interesting for a child, you know, to say, when most kids love swimming and pools and hot tubs, which landed us the next day at an urgent care because I was like, maybe he has, like, an undiagnosed, UTI or something.
I know it's a little bit more difficult to diagnose in boys, and it can cause some stomach pain. And, so the hot tub is kind of what sent us on this journey, ironically. Also,
the amount you paid for the hot tub and thinking that, oh god. Can we not use the hot tub anymore? What are we gonna do with it? It's it's A
100%. And it was post COVID. There was a six month wait. So we had a hot tub at our last house, and we were getting ready to move into this house. And so we put our name on a waiting list.
And people were waiting, you know, six to eight months for a hot tub, and it was being delivered. And we were so excited about it, and then it was sort of like,
this is not
going like it's supposed to. Yeah.
Yeah. Well, so you oh, so you think what made you think UTI? Was he peeing as well?
Yeah. And a lot of stomach aches with peeing. You know, looking back, we had all the telltale signs. He would just drink. Hey.
Like, he would take all of my drinks that were just sitting around and finish them. So we definitely had a lot of thirst. We definitely had some vomiting after eating and things like that. And but he was just hunched over. Like, he was just constantly complaining about stomach pain.
And I guess in my doctor Google searches, that's just one thing that came up. So I thought, well, let's go do a urine sample and, you know, see what comes of it.
Okay. And does that get you the diagnosis?
They yeah. We were probably there at about 08:30 in the morning because he had woken up and didn't feel good, obviously. Obviously. And that we did a urine sample, and we're waiting. And, you know, I'm thinking they're going to come in and say, oh, yeah.
He's got, bacteria in his urine. And so when a doctor and about three nurses walked into the room and said, well, we're not seeing any bacteria, but we are seeing sugar. And I'm thinking, sugar? You know, it wasn't connecting Yeah. Immediately.
And they said, although we can't give you a diagnosis, we are suspecting type one diabetes. And that then sent us to a much larger hospital.
Oh my gosh. That's just upsetting. I mean yeah. Do you are you all together at that moment, or is it just, like, you and him?
Just me. Just me. And, you know, at that time, with a six year old, they look directly to you as as a parent or a caregiver to see what what's your reaction? Is this, a detrimental diagnosis? Like, where where does this take us next?
And I remember just sort of, like, smirking and smiling and saying, okay. Like, we're gonna handle this. We're gonna deal with it. We're gonna head to the hospital. But, no, it was just myself, you know, and my son.
They did do a finger poke while he was there, and, of course, the setting on the finger poke was probably the highest setting. Although Cooper does like that now as his setting. But and I just remember him screaming because he had never done it before. Mhmm. And I remember his blood sugar was four sixty five
Oh.
Which is high, obviously, but not as high as some of the stories you hear about. We were told multiple times you caught this very early, or we were lucky and his body just hung on as long as it could.
Yeah. Yeah. Did you feel any sort of way? Like, when they said you caught it early, did it feel like, oh, good. I did a good job, or did that not, like, translate to you at all?
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At first, but I honestly look back and think catching it early put us in a completely different path, in many different ways. When we got to the hospital, he was not technically in DKA. They told us he was in DK, but they were only seeing very minimal amounts of acid, I guess, as they were saying, you know, with testing urine and and everything else. And because of that and being in a in a larger city, we went home after our diagnosis. We did not stay.
So 08:30AM, we're at the urgent care, finger poking at four sixty five. They're suspecting type one. We go to the major hospital where we have a really good diabetic center, and they said, what we're going to do is we're gonna keep you here. We're gonna run a lot more tests. You know, those were our initial blood work tests to see if we had any other autoimmune or anything else going on at the time.
Mhmm. But within six hours, we were headed home. They gave him a long acting shot of Lantus and sent home. And it was Saturday, and so they told us to come back Sunday. That Lantus was given about 01:00, I believe.
And so they said come into the ER at 01:00 and tell us why you're here, and we will give him a second dose of Lantus. And then Monday morning, we'll start your crash course into what this is going to look like for him and for your family.
Did did they admit him on Monday?
No. He was never admitted. We did everything from home.
Okay.
And they told us it was because we they were not seeing that acidosis part of DKA.
Sounds like it sounds like they did it because there's nobody working on the weekends that does that.
Yeah. Yeah. So, I forgot what I was gonna go with that now. But yeah. So so we went we went home.
I remember I have a type one diabetic friend who is, basically my age. We had, a bunch of other families who had type one diabetics that we knew of, and I remember them telling me, you need to go back to the hospital. And I'm like, wait. What? Yes.
You cannot be home with a kid who has a blood sugar four sixty five and, you know, is possibly in DKA. And I'm like, that's they're telling me he's not in DKA. And so go home. I remember saying to one of the nurses while checking out, what do I feed him? You know?
Because this is new to us. I had I I'm hearing all of the myths that go around it. He can't have sugar. He can't I was more familiar with type two than I was type one. Mhmm.
And they said whatever he wants. Just stay away from soft drinks. No sodas. No full blown Gator Gatorade, you know, like sugars. So stay away from drinks that are real heavy in sugar.
But other than that and I just remember sitting in the kitchen when we got home thinking, I have no idea what to do. I think we ended up doing eggs and bacon, which looking back is a good low carb meal, because I was just terrified to do anything that was, you know, full of carbs.
Yeah. I mean, I I so I can kind of I can see their side of it, and I can and, I mean, if they think he's not in a health they're probably thinking, you caught it so early. It'll be okay. We'll do background insulin, and then you'll come in and get the, you know, the the education on Monday. You'll make it till like, I almost understand that, but it it doesn't it doesn't allow for all the questions and the concerns that are gonna pop up and that you're gonna be by yourself alone at home.
Yeah. That's it. Yeah. It really leaves you on an island all of a sudden.
We we didn't sleep, you know, much of that weekend, obviously, which most people wouldn't. But I I do feel like there is a sense of security in the hospital. When my husband had asked, why were we sent home and we didn't stay? We were just told that they are different, that they have a better grasp on what's going on, and they feel confident enough that he could go home and that kids do better at home. I don't know many people other people who were given that Oh,
that story? Yeah. Well, it's interesting. Well so hindsight now is would you say it's five years?
Five years. Yeah.
Was it was it bad that that happened?
I don't think so.
No?
I remember finger poking, and it brought him down to maybe, like, one thirty, sometimes, you know, close to 100. And then we would spike, obviously, because we were just getting the background insulin. We were not getting any short acting because we didn't know how to do it. So, no, I think we were safe. I I I I think that would have been okay.
I I don't know what they would have done differently if they were just going to give him Lantus until, you know, until Monday, we got that. So, finger poke and make sure he's safe if you need I think they gave us a crash course on treating a low. But, you know, I don't think we had any emergency. I guess if there was an emergency, we would have dialed 911. Like, we didn't have a glucagon.
Yeah. They gave you a meter, though.
Yes. We had a well, I think they yeah. I guess they gave us the glucometer because we were definitely finger poking. But I don't think we got anything else other than that.
Yeah. Literally literally no insulin needles, pens, anything like that.
Yes. Correct. Yeah. Not until Monday.
Not till Monday. So that's an interesting thirty six hours there. What's that conversation between you and your husband like?
We just stared at each other, I think, most of the time. Like, I and, you know, we don't have a CGM. We didn't leave with a CGM, so we probably finger poked 10 to 12 times those first two nights. Mhmm. You know?
Because once the Lantus was giving, they had, you know, told us about a peak time of four hours. You know? And so it was given at one in the afternoon, which would not have had him go low overnight, technically, right, unless his pancreas would have kicked in. But yeah.
Do you have that, like, what did we get I can't believe we got married with a whole the everything's a giant mistake. What did I do? Like, was it existential, or was it more like I just don't know what we're doing and we're gonna sit here perfectly still till Monday morning?
Yeah. I don't my husband's very good. He is all hands on in our relationship, and he understands. I'm a stay at home mom, so I'm very lucky. I did not have to, like, worry about work on Monday.
Mhmm. Obviously, he's the one with the job and doing a lot of traveling and stuff, and so I always try to take on as much as I can. But he knows I need a break, especially when we weren't figuring Cooper out as quickly as we had hoped. So it was just a lot of listening. We had a our first child had reflux really bad as a as a newborn.
I mean, really bad. But he was gaining weight, so nobody seemed to care. We never slept. We troubleshot during that point and just really relied on each other. And so we had already been through something that was, you know, straining on our relationship.
We had been there. We had done that. So this just sort of fit that same narrative. Like, okay. We did it once.
We'll do it again.
Hey. Your first head reflux really bad, meaning and he drank formula, vomited it all up. Yes. It
was horrible. He slept for maybe an hour until eight months. And it It was horrible.
Did you have to go get that how old is that child now?
Jameson is, going to be turning 15.
Okay. And did you have to go get that special formula? Was he breastfeeding?
The formula nobody suggested21:01
Oh, nobody helped. We we honestly ended up in a kind of a similar situation where if you're not getting an answer you think is appropriate, you'd go for second, third, fourth opinions. We ended up with at this point, we were living on the East Coast. We ended up on a waiting list for a GI. He was three months old when I was like, something we have to do something different, but the wait list was six months.
And so by the time we actually got in, social media coming to my help again, some a friend of mine had recommended a certain formula that is already broken down so that his body doesn't have to digest it. It just solely has to absorb it. Yeah. And so we bought it offline. You couldn't buy it locally in a store, and it worked.
He went from not sleeping at all to almost four hours within a week of starting it. So by the time we actually got into the GI specialist, we had already sort of fixed the problem. And then when he turned one, they said he will either have a dairy allergy or it will just disappear. And luckily, it just disappeared.
So So Here here's something that you might find interesting. My first kid had the same exact problem. The one who's, yeah, the one who's not type one. He did develop, Hashimoto's later. Not to say that that's correlated,
but Right.
Yeah. You know, I am gonna look for an email from you if that ever happens.
That would be bizarre. Yeah.
So, yeah, same thing. We had to buy that formula. It was, like, super expensive. And, but he would, like, drink a bottle and then look at you, and it felt like someone threw the entire bottle at you all at once. Yep.
He vomited on Kelly at her grandfather's funeral. Like, it's
just it's just not burp. We would just turn him around and walk, and he would just projectile vomit. And then we would eat again because I think that the formula going down, maybe if he was having some burning sensation, the formula going down the throat was soothing. But then he would throw up, and it was just like this vicious cycle.
Yeah.
“A child never died from crying”23:03
But they didn't care because, you know, his head size measured perfectly, and he was gaining weight. And, you know, I remember a pediatrician telling me a child never died from crying. As I sat in the office in tears, like, I don't know what to do. We're not sleeping. And, you know, we had it again with type one.
Those nights that you're not sleeping add up. Mhmm. And we're eight months in, and I'm struggling. My husband's the one with the job. I'm trying to take on as much as I can, and he was helping for sure.
Uh-huh. And your answer was, yeah. You just need to figure it out on your own. I mean, nobody even suggested to us because we had formula fed from the start. Why don't you try something else?
Yeah. A child never died from crying. Has it ever died from a crazed, sleep deprived woman driving it into a lake? Because I've heard that one.
Yeah. And you've seen a lot. I know. I I asked for help. I'm there asking for help, and nobody wants to help.
So luckily, you know, grandparents came to town, and they would put him in a stroller and walk him around our 1st Floor while we tried to sleep. Mhmm. It was yeah. So my husband and I had been through it before, you know, and then we were kind of seeing it again because Cooper's diabetic story is very similar. We were asking for help.
Like, something's not adding up, and we weren't getting any answers.
Is your first having any benefit for is the house I guess I should ask first. Is the house just gluten free, or is it just for the one child?
At the beginning, we went gluten free for the whole house. Now all of the meals that I make are gluten free, but we definitely have things with gluten in them. And Cooper has in the beginning, I was sort of like, I don't know what to do with this. Do we make everybody do it? And so in the beginning, I just didn't really say much.
And I would say about a good six months in, Cooper finally just said, you guys can have gluten. So we were sort of like, oh, okay. You know? So, but meals are still strictly gluten free. But, yes, my older son does.
I think he would struggle without glutens. But I do have a question for you.
Yeah.
Does your son have any antibodies?
He did oh my god. It's so long ago when he was then he did it. I don't think he had any. No. I mean, I I I'm trying to like, he gosh.
I'd have to dig it out. He we did trial net. Yeah. I don't think he had any antibodies.
Antibodies, siblings, and a creeping A1c25:31
And His Jameson did not either, and then that opened up a whole other avenue for us. We had universities calling us, wanting him to do the MRI study, which I led up to him and he did. You know, all sorts of other interesting things. And I just remember thinking, wow. Is this, like, rare?
Like, why why do we have some and I guess with Cooper being so young at diagnosis, they sort of expect a sibling to have at least one antibody. Okay. And he still does not have any at 15.
Been checked multiple times?
Twice?
Twice.
Twice? Two or three times? And was just recently checked this spring because we had a creep in an a one c, but he's in puberty. And so I panicked. His a one c was hanging at, like, a 5.9, 5.8, 5.9.
And when we went in, the endocrinologist said, yes. But he is in puberty, and that happens a lot, which I was hoping was going to be the answer. Right. But he said, I'm not concerned at all. He did ask me an interesting question.
Does Jameson's father have type one? And I said, no. None of us well, I have antibodies, but none of us technically have type one. And he said, okay. Then most likely, Jameson will be in the clear because a father passing down to an offspring, I guess, is way more common than the mother.
So Jameson has a much greater chance of coming out of this without type one than he would if my husband had his father had.
It's interesting. Any how about your side of the family? Your parents have Hashimoto's or celiac or anything like that?
Nothing. No? We might have a couple relatives with thyroid, but that's not even on my side. It's on my husband's side.
Yeah. No. I was but but you but you have antibodies?
Yes. Two.
That's why I was asking about your side. How about, like, less, you know, common autoimmune issues? Like, I don't know, the ones where the fingers get cold and blue or, patchy color on your skin, vitiligo, or something like that.
Nothing. And my parents are both reaching 80 and don't even take medication for any help of anything. They're super active, super fit, and we don't have we don't really have heart we don't have anything, really. Super lucky.
Little bit of thyroid on your husband's side?
Mhmm.
Okay. How about about I know this is not autoimmune, but any bipolar people in the extended family?
No. No. Nothing.
Psoriasis, bad allergies?
My husband's My husband's side.
Yeah. How about that? Okay. Okay. Okay.
Yeah.
And he has no antibodies. So kind of interesting
Yeah. It's weird.
How we got here.
Yeah. I mean, interesting is the right word, not the wrong it feels wrong when you say it, but, it is really interesting. Okay. So you go back for the education. You get going.
Do they send you home? Like, do you feel, like, ready when they send you home? What kind of technology did you have? What was the first six months like?
Yes. So that week, we got a CGM. I think it was three or four days, and it's a pretty extensive crash course. They are very well known for that. They are very good at getting us to understand what's happening.
So, yes, we felt very confident by the end of that week. Like, here we go. We're, you know, we're ready to rock.
It's awesome. Your goals going for like, forward in the beginning, where is it like, did you understand the the the implications of a low blood sugar, for example? Were you, like, guarding against that? Were you guarding against highs? Were you looking like, what what were outcomes supposed to be?
Okay. So we seem to pick up the honeymoon phase pretty quick, and then we didn't seem I kinda laugh at this now. We didn't seem to leave the honeymoon stage for almost two years. And there's a reason for that. I don't think we were in honeymoon, but we saw a lot of lows.
In the very beginning, Cooper like, I remember our oldest son had one of those water slides in the backyard for a birthday party. And I remember Cooper did not have insulin, so nothing on board. We weren't on a pump, but MDI. Nothing on board except for a little bit of Lantus in the background. And by the end of the party, he had drank an entire I guess it's a half gallon container of orange juice, multiple juice like, we just could never keep him above a low.
It was extremely difficult. And so management from that onset for the next two years was a nightmare. I just remember talking to a lot of other type one families. Ironically, Cooper in his elementary school, he was one of five. We have a lot of diabetics, and there's only about 500 students in the building.
So people used to always say, I don't know what's in the water on this side of the district, but we have a lot of type ones and a school nurse who was amazing and helped kinda troubleshoot through it all. But he didn't seem to be like anybody else that we had met. But then you chalk it up to, well, everybody's different. Right? Some things work for some type one diabetics and other things, you know, work for other type one.
So we kind of went with that. But it took us a while to really get in a groove, and that kind of led us to where we are today. And I will say for the first time in about five years, we are finally where a lot of people get after a year.
Oh, what do you think happened? What do you think slowed that process down? So, partially, I'm gonna guess honeymoon, low blood sugar is hard to be aggressive, probably hard to even feel certain about anything. Is that fair?
Yes.
Okay.
So what we see with Cooper in celiac, and it's not always the case, if he is gluten, his digestive system turns into what many would see, with a stomach bug. So when a type one diabetic gets a stomach bug or anybody for for that matter, your body stops absorbing. And so that's why, you know, I'd read all these things about, oh my gosh. We ended up needing a lot of extra help. We couldn't keep our, you know, child, our type one diabetic above a certain number.
We saw that a lot. Mhmm. We were continuing to get vomiting because we were told that would subside. So this is before a celiac diagnosis. We were finger poking, I bet, 30 to 35 times a day.
Because? His blood sugars were crazy. You would finger poke seconds apart. He would be 108. Then you'd finger poke, he'd be two twenty five.
Three seconds later, finger poke, one fifty. And our school nurse looked at us like, I have no idea what's going on. Yeah. And we didn't either.
Right. Right.
And so anytime we would see a drop in a blood sugar, I'd have to send them to the nurse to say, you need a finger probe because I don't the CGM would try so we used to think the CGM was not very good, and that is not accurate at all. It didn't know what to do. It would oftentimes just lose an arrow and just pick a number and stay there because the numbers were fluctuating at such rapid paces, it could not keep up. And so where now, we use the CGM to really get a idea of what, you know, his blood sugar is in somewhat of a timely fashion. I know it's delayed, so it was a finger poke, but it just wasn't close enough.
We we'd have to just finger poke all the time to reassure, and we just couldn't get an answer. We were constantly contacting our endocrinologists at the time and, you know, in the portal ratings. Like, we don't know what's going on. Every three months, I would sit in there, you know, telling them, we cannot control his blood sugars. And, well, it's just gonna take a little bit.
You know? It's it's gonna take some time until you get used to understand understanding his body and, you know, his needs. And we would get somewhere, and then it would happen again. And we could not figure out what is going on. Right?
Like, are we hitting a muscle when we inject his insulin? You know, there was just we were constantly troubleshooting. If you go back to the Juice Box podcast around the years of 2022, 2023, probably beginning of twenty twenty four, I I bet I'm on there four times a day.
Yeah. It's gonna
be Yeah. Constantly kept asking question after question to try to figure out, like, what is going on? And, honestly, it was it was, you know, one of your viewers, one of your listeners who responded, are you sure this is not celiac? And I said, well, I asked. And they said, well, we tested him a diagnosis.
So we won't retest him for a year. And I said, I understand that, but we're we're really struggling with managing his numbers, and they refused to test him. And so I ended up going elsewhere to a different facility who tested him immediately. And
Said, hey. Got celiac. Yeah.
Yep. Yep. But not all not all celiacs experience that. We have a couple friends whose kiddos are type one and celiac, and it doesn't affect their blood sugars at all. So I don't know what makes that different for him.
I am finding that it's not very common, but
it's it's when completely you shared it on the group, somebody else was like, that sounds like what happens to me or something like that. Yeah.
Correct. Yeah.
It's awesome.
And that probably took almost a year. I just kept rephrasing because I'm like, oh, like, yeah. I understand. Like, yes. Know, because it's the constant, is he getting insulin?
Did you hit a muscle? All of those things. Yes. And they definitely play a role in all of it. But then something would happen again or it would just not really work out for us.
And so then I thought, okay. I'm gonna ask it this way. Okay. I'm gonna tell them I've done this. A lot of those posts at the end were, yes.
We've tried this. We've changed cannulas. We you know, we've done all of these things and we're still seeing it. And then finally, somebody saw it and said, are you sure? So we ended up switching endocrinologist.
They give him a blood test, which is super easy now. You don't even necessarily have to go in for the biopsy anymore.
Really?
Especially if you're you're committed to cutting out gluten. And we also had type one. And so the idea that three of them like to run together, celiac type one and possibly his thyroid down the road, You know, the GI was quite confident. We don't need a biopsy unless, you know, you're having continued issues. And so we're at a birthday party.
I will never forget this. It's a Saturday. We sit down. We did all the play you know, play for an hour and then come back and eat, and they put a slice of pizza in front of him, and my phone rings. And it's the nurse practitioner from the office, and she says, you're right.
He has celiac, And he's smiling. Right? It's like one of those surreal moments. He's smiling. He's getting ready to shove this pizza in his mouth, and I'm thinking, do I rip it out of his hands, or I just let let this be the last hurrah?
Like, you know, enjoy that pizza because it's about to change. Looking back, I should've ripped it from his hands because it caused so much problem for us, and it took almost another year to be so strict with gluten to make sure there was no cross contamination that it almost took his body a good year to really Bounce. Calm down.
Yeah. Talk about that a little bit. Like, it's not that easy just to, like, wipe that from your house, right, or from your I I mean, even your style of eating or preparing food or anything like that.
Well, and what's what most people don't realize and we did not as well, it's everywhere. We had to change shampoos and soaps, laundry detergents, sunscreens. It's not just what you ingest. It's everywhere. And we have found out that him touching it and then eating something or getting his fingers near his mouth can affect him.
And the further we've been away from gluten, the more severe his symptoms are if he is gluten. Okay. Now if he's full blown gluten, I mean, it's it's a panic attack. He really freaks out because it causes such illness, vomiting, diarrhea, stomach cramping. I mean, he he almost pants like a dog when he's when he realizes, I think I was gluten.
His numbers start to go crazy. His body stops digesting. So then we start real we we have so many profiles because of celiac. I honestly think the celiac diagnosis for us was worse than the type one diagnosis.
I have heard people say that before.
Yeah. A 100%. And especially because it affects his blood sugars. So now they're working together against us, Right? Instead of just saying, hey.
We're gonna be gluten free and make sure that our digestive tract is okay. Our blood sugars are affected. So Cooper has three profiles. We have a profile and and I do think it is a little bit of him. I don't wanna blame everything on celiac.
I do think his body is just unusual. His insulin needs on a day to day basis drastically change. There were days where he needed forty units of insulin plus and other days where we barely gave him five units in a day. And these these variations are all in the same week. So we get up in the morning, and we eat breakfast, and that rise in a blood sugar tells us the day we're about to have.
And that's why we have had to have multiple profiles. I we've probably been to five endocrinologists. We're we're now settled in, and we're good. But of those five endocrinologists, every single one of us or every single one of them wanted us to delete all of his profiles. No.
You should have, like, a sick profile and then, like, his daily needs. I said, okay. We would erase them, and then guess what? Be right back to multiple profiles. So just this week alone, we've switched between those three profiles probably five times.
Do you have names for them?
Yes. We do. Yeah.
What are they?
We have one called weekend because it used to seem like the weekend would bring on less insulin. We have one called puberty because we thought we were seeing, like, growth spurts, but now we're realizing maybe that's not the case. And then we have one called some, and some is, like, hardly any insulin. I finally had an endocrinologist tell us or or test him in the spring. He was never tested to see if his pancreas was producing any insulin at all.
And so I finally had them test this past spring just to make sure that we weren't dealing with some, like, you know, overactive pancreas down the road. And he has, what, point zero one, which is an indication that nothing's
No production.
Thing's being made. Yeah. You made me So we definitely know it's not that.
Yeah. You made me Google gluten free shampoo because that is a thing I'd never knew existed, but there it is. How about that?
Wow. Wow.
And so you're saying to the so the better you are at keeping him away from it, the worse it is if he should encounter it.
Yes. And I think his body learned to deal with it. I mean, obviously, when he was overly glutened, it would cause vomiting. We thought he had a stomach bug one year about six times, and I came to realize, I think we were gluten. Because the it's very similar.
A stomachache, vomiting, diarrhea, you don't wanna eat. Right? It comes across very similar to a stomach bug, but it wasn't. Looking back, it was just his body saying, yeah. We're not we're not gonna do this.
So now if he is gluten, it's it's it's pretty severe.
Yeah. So sorry. It's just it is it sounds horrible. I don't really know nothing to say.
But Yeah. Yeah. It makes you appreciate diabetes differently. So Well, it
must I mean, you alluded to it earlier too. You said you you guys you didn't use these words, but you you've had enough experience already that your perspective is different about about life and, and what the big deal is versus not a big deal. In your, in your note here, you said cannulas. That was one of the things you wanted to talk about. Why why is that one of the things you'd like to talk about?
Well, when Cooper's diagnosed, it took us a while to get to a pump because they really want you where we were to be at about ten units of insulin in a day, and we weren't getting there. Now looking back most likely because of celiac. And so it took us a good year till we got there. And at that point, the only Control IQ that was out there was Tandem. That was it.
So we didn't really have a choice to go tubeless. We are still with Tandem today. I honestly think it was a blessing in disguise because of being able to have multiple profiles. We have had several ENDOs tell us that, sadly, Omnipod probably wouldn't work for us because of the algorithm it uses, and that it's learning the body. And because Cooper's needs change so drastically, we kind of have to manipulate that.
And we have had to change profile settings time and time again, and we just it probably just wouldn't work very well. But I will say Tandem has one of the best customer services. There are so many people on the other end of the phone who were really trying to figure out what is going to work best for Cooper. We ended up with a TruSteel because of having multiple issues with bent cannulas early on. I don't know how much the cannula really was the issue because I think gluten was really our problem early on.
But we have now since oh, sugar. I can't think of the one that we have right now. We're oh, it's a 45 degree angle. 90 degree angles or anywhere near that doesn't work for him.
Okay.
He's too thin. I mean, he a lot of our celiac friends or friends that we know that have gluten issues and stuff had very similar body makeups when they were young. Like, he's real tall. He's real thin. I bet he has, like, 1% body fat, maybe.
And so, like, we don't have any squish at all. I do think with the 90 degree true steel, we were just hitting muscle too much. And so last summer, Tandem said, let's try a different let's go in at a different angle, and that has been amazing. So when he was diagnosed, like everybody else, his a one c was, like, 13.2. We had then, with the help of the pancreas coming back into play, dropped down to 6.8 and quickly ended up back at 8.4.
So we had made that initial fall and made an abrupt turn to go back because we think celiac was kind of coming into play. It took us five years to get back to the sixes. We we would get to, like, 7.3, 7.4, 7.2, and but we just were still having such issues controlling his numbers, realizing, looking back, we probably weren't as strict gluten free as we could have been. So in changing that and in changing the cannula, we finally got back to a six point eight, which is the lowest a one c he has had since the initial diagnosis in the fall into 6.8. And so we've been cheering for that because it's just taken the variables that it has taken us to get to where we are is not typical in most type one journeys with having so many friends.
I mean, many of them settled in within a year. Everybody's different. Totally get it. But five years is quite a long time for us to sort of figure out. And I was just super grateful that we had multiple cannulas to choose from and to try.
And, you know, the tubing hasn't been that bad. He loves to be able to remove it and get two hours, you know, playing a sport and things like that. But I would say within the last year, we've really seen a change in, his management. Being able to play a sport and not have to panic, he's going to go low, being able to control the fluctuation of his blood sugars, it it's honestly I feel like we've finally made it to the other side.
Wow. That's such a long journey. There's so well, you know, it's so much to figure out and so many possible I don't know what to call them. Like, right, like, like, ghosts out there that you're like, oh, it must be this. It must be that.
It must be and then to figure out, like, oh, probably wasn't that. It might have been this. It could have been more gluten than it. I mean, it's just how did you keep it all straight? Would did you have, like, a one of those big whiteboards, like, out of a, like, a whodunit movie where you, like, stringing yarn across the room?
Or how do you keep track of all I'm serious. How do you keep track of all that? Or do you just eventually just keep knocking things off the list until there's only left what's left?
That. And finding the people who were willing to hear it. So at the first endocrinologist where we first started after diagnosis, I remember sitting in a room talking to one of the nurses. You know? Like, of course, they check-in.
How's it going? How's everything going? And I just lost it. Just started crying because I was working on zero sleep. We could not figure him out.
Nothing made any sense. Eat a lot of protein. We're doing that. You know? Mhmm.
Figuring out the digestion and how things are digested. None of it made any sense. My husband's a math major from an Ivy League school. Like, we're calculating stuff. We're and we just could not figure him out.
We had lots of friends who were just up in arms. You know? I have no idea what's going on. And I remember the nurse telling me, you know what? I think you just need to move on.
I think I think you need to stop looking at his CGM. Well, we couldn't. It this fluctuation in blood sugars for us is what landed him into a seizure.
But your nurse told you just to give up?
Yeah. Awesome. That's why that's why we left. You we deserved a little bit better. Right?
Like, we're we don't look like crazy maniacs. We're just trying to figure out, you know, how how is what you're telling us not working? Like, how is none of this working?
Hi.
There's None of it made any sense.
There's a dog latched onto my right arm. He chews sometimes, but sometimes he just holds on. It hurts worse some days than others, but what do you think I should do? Is it have you tried looking to the left? I just Yeah.
Yeah. Just don't worry about it. Have you tried not worrying about it? Oh.
“Have you tried not worrying about it?”48:12
And after the seizure, we couldn't. I mean, that really
Yeah.
That really set me back for months. And so, like, how do you keep going? I just I have so much experience with I've had Lyme disease, multiple co infections, and doctors who have said, there's nothing wrong with you, and I knew there was something going on. Mhmm. You just have to find yourself in in the right path with the right people.
So ironically, Cooper's elementary principal's son was a type one diabetic, diagnosed at 13. He went off, played college football. You know, he's doing all these things. He's now an ambassador for Tandem. He played professional football.
We we honestly ended up in the right village with the right support group. And I would never forget his wife saying, if you ever find that you're not getting answers, let me know. I've got somebody who's amazing. And so she pointed us in the direction of this, pediatric nurse practitioner who gave me her cell phone number. We checked in, and she said, here's my cell phone.
A cell phone number that changed everything49:08
I want you to call me when it happens. That changed everything.
Oh, really?
I called her and said, he's vomiting. This is happening. And, you know, should we go to the ER? We can't keep his number up. And that's when I said, I really think we need to test him for celiac again, and she agreed.
And we we worked with her, you know, for about a year and a half. Their practice ended up not seeing type ones in the end, and then we got shuffled somewhere else. And we're still at a really great place. This this practice is fantastic as well. But, you know, when you're just not getting what you if something doesn't seem right, you just have to keep asking questions.
You just have to keep searching, and maybe one day you're gonna run into somebody like the person who commented on my post. Are you sure, you know, he's not celiac? I wouldn't have once they told me, no. We're not gonna retest him, I would
have forgotten about again. Yeah. I try to I try to get that across to to doctors all the time that the thing you say, you better be right about because that's gonna become, like, doctrine in my thinking. I'm I'm I'm either gonna think this is the most important thing in the world because you told me it was. Or if you tell me it's not important, then when I'm trying to figure out a bigger problem, I'm never gonna I'm never gonna calculate that again.
That's done. We figured out that's a no. You said no to that. It's just Yeah. Yeah.
That could happen to you so easily.
The appointment she cried the whole way home from50:24
Oh my gosh. Remember leaving that appointment when that nurse told me I just needed to move on, and those were her exact words. And I cried the whole way home, and I remember Cooper not knowing it. You know? Like, you're trying to, like, keep it together because I don't want him to ever feel like, oh, I've created this burden in our family.
We're very open as a family. We talk about everything, and we're going to make mistakes. It's going to happen, but we're, you know, we're doing our best. And I remember crying the whole way home and just kind of having a conversation with him. We got home.
I wiped all my tears away, and that honestly lit something in me that I was like, I'm done. I'm going somewhere that they're actually going to listen to what's, you know, to what's going on. I didn't wanna put him in a situation. That seizure changed me, and I felt like it could have been prevented if some of my concerns would have been addressed early on. Mhmm.
Looking back, he may have needed less insulin, but that was only because he wasn't absorbing. Like, he was gaining some weight, but not really at levels or rates that other kids who are die you know, I see those before and after pictures, and they're, like, drastically different for a lot of kids. Not him. He kept that slender look. He was still vomiting.
We still had so many other symptoms that weren't solved by just insulin.
Okay.
So I do think that that you know, I just I just kept saying something's not something's not right. And I'm not one to just sit back and say, oh, yeah. I guess that's it. Like, we've tried everything. And I'm still troubleshooting to try to figure out what works best for him.
Why not? And he feels better than he's ever felt. He's happier. You can see it. You know?
So Yeah. That's nice. It's good it worked out. And I am you know, you said, like, how do you keep tabs of this stuff? I blogged in the big beginning just like you did even when social media was thick, and I was constantly posting on social media and constantly, like, asking questions and just, like, arranging everything, organizing my thoughts to see if maybe something just stood out Mhmm.
That we can maybe get a better answer. And I am so glad that early on somebody said, you need to join the Juice Box podcast because, honestly, Scott, I I'm serious. Majority of where we ended up and where we headed came from, the members of the group.
Oh, that's awesome. It's such a wonderful group of people. Yeah. I'm very happy to be associated with it in in in in such a you know, in a way that would make you come on here and share, you know, what what's going on. I don't know how to describe how that thing morphed into what it is now, but I it doesn't surprise me at all that you found your answer there.
I mean, obviously, you had to be, you know, steadfast about it, and you you it's not it's not you don't sometimes you just don't type in question and get, like, you know, life changing answer. Right. Right. It's a bit of a bit of a process sometimes, especially when there's just so many variables like like there is with this situation. Oh my gosh.
Well, you said a couple of times that I see having your son have a seizure was, like, life altering. Do you mind talking a little bit about it? Like, he had a a low blood sugar, obviously, created a seizure. Was he sleeping? Was he awake?
How did it happen?
The night of the seizure53:36
So because we probably were having those crazy blood sugar swings early on before we got that celiac diagnosis, instead of giving a long acting once a day and before bed, like a lot of times, many diabetics early on will do, we ended up split dosing. We would give a little bit in the morning and then a little bit at dinnertime. So we had given our long acting at 05:00, half the dose like we normally did. And so we always knew come 09:00, if we were going to see, when it peaks, if we were going to see a fall blood sugars, it it would show. So 09:00 comes around.
I remember him being, like, one sixty and abruptly just turns. We hadn't given any short acting. It was 100% long acting that was left in the body. And I think it was around four units, I wanna say, but I don't quote me on that. But we had been to a graduation party, and they had a mac and cheese food truck.
And Cooper had eaten a giant dish of mac and cheese. And I think what happened is for us, this is not always the case because I know early on, the the odds of you, you know, having something like this, it can happen. It's it's common because you're trying to figure it out. And his number turns, and he's dropping, you know, and we're we're pumping him full of stuff because we know that he's very hard to turn low blood sugars.
Okay.
And it's not stopping. And he probably drank. We ended up we we kind of ditched juices early on because he was needing so much of it, and it was honestly making his stomach worse. So we would we switched to Coke pretty quick because Coke is very easy on the stomach, and he could handle a lot of it. And so that's what we were giving that night, and it just it just wasn't turning.
We're finger poking, and now my husband and I are starting to panic. Right? We're seeing 70, double arrow down, sixty, fifty, forty. We're finger poking at 34, 36, 35, 34. I just remember finger poking over and over and over.
And when it when we realized we were in trouble before we had finger poked in those thirties, He started, like, twitching. His shoulder started, like, lifting, one on one side, one on the other side. I was like, what? What are you doing? He's like, what what do you mean?
What am I doing? And I said, why why is your body twitching? And this is before I truly knew that we were in trouble. And then pretty quickly, he went into a full blown seizure. We dialed 911.
My husband had worked at a camp with a lot of campers who had disabilities and seizures, so he had dealt with seizures in the past. Thank goodness. Because, you know, you think you're ready. I'm ready. I have my glucagon.
I'm ready to rock. Right? I've got Baqsimi at the time, like nasal spray and everything, and I I panicked. I I was horrible in this situation. And, hey, maybe give yourself a little bit of grace.
I got it. But I yeah. This is why I'm not in the medical field. And we dialed 911, and the lady on the other end was amazing. And we said type one diabetic.
Apparently, he's got too much long acting on board, and so she just went through the whole thing. But, you know, Scott, the part that really affected me the most is he stopped breathing. And that's and he's turning blue. He's turning gray. She knew exactly what was going to happen, though, because she'd asked those questions that led into it.
Is he breathing? And I said, no. Actually, I don't think he is breathing. Is he turning blue? Yes.
He's turning blue. Okay. I want you to turn him on his side because, like a lot of seizures for fear of vomiting and stuff, they wanna make sure that, you know, we keep his airway clear. And she must have had a timer or something set that happens. I'm still not very familiar with seizures.
But at one point, she said, okay. In a few more seconds, he should start gasping for breath. And I thought, what? So and I'm, you know, I'm full blown. Like, should we be giving CPR?
Like, what are we doing here? And almost on the dot, she said, okay. Is he breathing? I said, yes. He just took a huge gasp of breath.
And she said, okay. That's good. But now we need to keep him on that side, you know, in case we have vomiting and things like that. And the paramedics who showed up were fantastic. He did have vomiting.
Luckily, he was alert and on the stretcher. But, you know, after giving Vaximi, which we did do, kinda forgot that part, but we did do the nasal spray. He never he ended up in the hospital. We stayed just that night. He never got above one fifty on a blood sugar.
Because a lot of times, they'll say, like, oh, if you over you know, if you're using the glucagon and the liver's releasing all of its its glucose, you could see some sticky highs. We never got that. He never went above 200, I don't think, for that, you know, that entire, next few days. But, yeah, it just and I think I think it really affected me too is because we were searching for answers we weren't getting.
Mhmm.
And then on top of this happens. And I think part of me thought, could I have prevented this?
Okay.
You know? If somebody would have just maybe listened to our story a little bit closer, maybe we wouldn't be in this situation, and we haven't since then. But, yeah, it just was it was the first time something severe happened, and that's when I realized, okay. You know, like, we we need to really and then I was half afraid to use insulin after that for multiple months. And I kept him below 200, but I didn't keep him where we should keep him.
Yeah. Because you get you just get aggressively scared of it happening again. No. I know. How about for him?
Did it stick to him?
No. He doesn't remember at all. He now talks about it a little bit like, oh, yeah. Had a seizure, but I don't think and I have a couple pictures from from that day. He ended up kind of having aggressive tactics from when he became conscious again from the seizure at the hospital until about 6AM.
At about 6AM because they had to hold him down and kinda, like, tie him down to the bed. He was aggressive for a long time, and that was hard to see as well. And about 6AM, he just sat up and was like, what are we doing? So I'm not so sure. And he was young.
He would have been seven, about to turn eight. You know, we were only a year in, still MDI. I wish, though I kind of wish somebody would have said, are we sure we can't do a pump now? I I think we would have been better off. I am honestly a little terrified to ever go back to long acting because of his variations in, you know, the insulin that he needs in a day because of celiac.
What the celiac diagnosis explained1:00:19
And so I kind of wish somebody would have said, you know what? If we because I could have turned the pump off and curbed that fall, but I can't take back long acting. Yeah. It's there. And it's there pretty aggressive if it's way too much.
In that situation, around the birthday party, it's it's a year into his diagnosis, you said?
When he got the celiac diagnosis?
No. The seizure.
Oh oh, from the graduation party. Not not quite. That would have
been Okay.
May. He's diagnosed July. So, yeah, pretty much.
Pretty So you don't really know what you're doing with gluten yet at that point. So he's Right. Like, so there's the macaroni that's got gluten in it. Right?
Yep.
And then the cheese slows down his digestion, and probably probably everything probably gets, like, wonky right there. Like, with that all that noodle, like, I don't know. I listen. I don't know if I'd be scared of the shooting. I take your point about the long acting insulin and that fear that, like, once it's in, it's in, you can't do anything about it.
But I don't know. I think you'd be fine.
The only the only reason it would be a fear, not long acting itself. I think in in a normal situation, I think it's great. I do also like to see when type one dive actually, like, you know what? I'm just I don't I don't I'm not feeling the pump right now. I wanna take a break.
I think it's a great option Or athletes. The principal's son, you know, he he has the opportunity to use it or giving multi daily injections while he's playing football and stuff so he doesn't have to worry about a pump. So, yeah, there's tons of benefit. The only problem I have with it for Cooper as a celiac, if he is gluten and his body stops absorbing, it doesn't matter what we give him. It is very difficult to turn that low.
Can't
do where I have you know, where I'm just a little, like, I just don't feel like I have much control over it.
Sure. So I don't dis I mean, I understand where your fear comes from. Look. My kids had a seizure. I know what you're talking about.
So, yeah. Jeez. Well, I appreciate you sharing that. That's couldn't have been easy to to relive, to to share here. But I think it's important to, you know, I just think it's important for people to hear those stories once in a while.
It's not it's not all just like, oh, just do this and it'll be fine. Like, sometimes it's not fine. You you know? And and you you should hear about that once in a while. And you hit them with a backstory.
It didn't it didn't slow anything down. Or it might have, but not not to the degree you needed it.
Yeah. Yeah. Yeah. And I think everything you know, to put things into perspective, gosh, I think of us as just a family and how much stronger we are through all of this, how gracious our older child has been as we, like, worked through it. You know?
It's this is life. You know? And, like, there's going to be something every which way you turn, And how you come out on the other side is a 100% it determines, you know, the type what you do with it, I should say. And so I think this is I think Cooper saw us as they didn't just say, okay, when they were met with, you know, you just need to move on. So I'm hoping that it shows how important it is as he is now, you know, starting to jump into puberty, how important it is to take care of your body, to you know, for all the preventative measures, to take things like celiac seriously.
Right. You know?
Push back when people tell you don't worry about it, and, you know, there's something to be concerned about. Yeah. Yeah.
Yeah. Yeah. For sure. Yeah. So hopefully, maybe somebody will hear this and be like, woah.
I think we're seeing a little bit of this. You know? Or, like I said, it was that comment that really set us in this direction because I probably I've just been told multiple times, like, nah. It's not that. We don't need to we and I'm thinking all I'm asking is a blood test.
Just just run the blood test. Right. Like, I'll pay for it out of pocket. Shoot. That's cheap in comparison to most of this.
So I'm just glad that we ended up in the in the hands of a nurse practitioner who was like, call me. I I wanna see what's going on. And I kind of wish that would have happened when our youngest was having such bad reflux. And, you know, I wish somebody would have been like, let me let me take a better look at this. Because not everything is as it's supposed to be.
So
Yeah. It all I was gonna say, it it also gives you good perspective for, like, look how many times you had you had different issues before one person stood up and said, I'll go an extra mile here to make sure your kid doesn't feel this way. That's Yeah. You you know? And you might bump into six more problems moving forward before you meet another person who's willing to do that again.
Right. And, you to
keep in mind.
Once once we realized how bad celiac was and then obviously putting it on top of type one. But then, like, my whole I was a teacher. My whole perspective of food in the classroom changed. And just not that we have to be, like, super strict, but the fact that so many situations in life end up with, I just don't wanna listen to you at this point. Right?
Like, I don't wanna like, I feel like if we just listen to each other a little bit more and really cared about the next person or the community, like, gosh, the difference we could make.
Yeah.
And just getting that person to listen and hear your story is half the battle sometimes. So
Well, good luck. I mean, yeah, it's it's hard to it's hard for people not to jump in with their own bias. I don't even that's, like, a a catchy word to use. But, like, you know, you say, you know, this is the thing that happened to me, and somebody who has nothing to do with it and has no firsthand knowledge of it will just apply the first thing that pops into their head to it. Like, I think you're wrong about that.
Based on based on what? I don't know. It's just what I think. Oh, okay. You know, like, that it happens all the time.
I have a a a an acquaintance right now who, started using a GLP medication and, has a huge impact on they they had real, like, serious gut problems, you know, a lot of, like, running to the bathroom, like, a lot of stomach problems. Right? The stomach problems made them anxious because they were worried about where to go to the bathroom. They had some psoriasis. They a couple of different things.
Start taking a GLP, the whole thing just goes away. Just it's just all so much better now. And this person goes to the doctor to say, like, look. You know, I took a GLP without asking you. Here's what happened for me.
I'd like to get a prescription for it, because I don't wanna go back. And the doctor said they went to the gastro first, the doctor said, I I'm I'm not comfortable with this. You you'll go talk to your regular doctor. Just like that. Like, saw all of the benefits that happened and said, well, how do we know it was actually the GLP?
And she's like, well, because I'm telling you, shot the GLP on a Monday, and the following week, all the problems were gone. And I've been taking it since then, and I haven't had any of the problems. And prior to that, nothing's worked over the last, I don't know, eight years. Yeah. And the doctor said, well, you know what I prefer if we got a baseline.
Let's take you off the GLP. Let the symptoms return, then we'll give you a colonoscopy. Then and and that person came to me and said, what do you think of that? I said, that's insane. I would not do that.
I was like, what? They're gonna put you back in pain, back in peril. I I to prove something that we all already know is happening anyway. There's by the way, the doctor also knows but wants to cover their own ass for.
Yeah. I'm like, unbelievable. That was I was sort of glad that this GI after we got the blood results and here's the thing. The test that we took is basically, the end result is anything greater than 20 should be eye opening that your body's not receptive to gluten. Okay.
Right? So a friend of ours that lives somewhat close by that we met through another friend, and her, kiddo is celiac as well. His number was, like, in the hundreds, like, astronomical. Cooper's at the time was 47. That's not that much greater than 20.
And I didn't even wait because it was gonna be, like, six weeks. Make sure you're stuffing him full of gluten. Well, because it was affecting his blood sugars, I was like, what is the purpose of that? Yeah. I'm just gonna cut it.
We're gonna go from what I thought was super strict. And then when we get into this, see the GI, I'm gonna tell him, yep. It worked, you know, or it didn't. And we weren't as strict as we are right now, but we were definitely as strict as what we thought we needed to be. And we by the time we got in for the appointment, he said, did you cut gluten?
I said, absolutely, we did. I said it was affecting his blood sugars, and I wasn't about to put us in another risky situation. And he said, how's it going? I said, 50% of the problem is solved right then and there. So I said, within a week, everything calmed down.
And then we had some more troubleshooting. Hey. Maybe this isn't the best cannula. So we did have a bunch working against us. But sometimes common sense is just, hey.
I mean, what's the GI gonna tell us now in your acquaintance situation? You're kind of relying on a script, so it's definitely different. But for us, it was easy. We're just gonna cut it. You know?
And then if it works, if it works, it's great. So
I'm with you.
But yeah. Yeah. It it's hard. I I you know, I'm a teacher at heart, and so I'm always like, sure. What can I do to help?
I'm always willing to try something. I just realized through this process that's not always the case. And sometimes it's because they have too much going on in their own. Got it. I totally got it.
But I'm always just the type of person to be like, yeah. That's interesting. I I hear what you're saying. That does not make any sense. And I don't think we got that at all, not without us pushing.
So
I think it's sad, but I think it's common. And
Yeah. Yeah. Right.
And, really, it just it I don't you can say what a I heard you say just a second ago, like, well, maybe they don't have enough time to put into it or whatever. But I I it's starting to feel like a a convenient excuse, you know, that when somebody doesn't have a good health outcome, you go, well, you know, it's the health care system, and I only have fifteen minutes with them. Like, once he it's it's just become the thing people say.
I used to write a sentence on my whiteboard when I was teaching, and it would be find the grammatical errors, make the corrections, and rewrite the sentence. And I they were always fun facts from, like, history and past experiences, etcetera. And I'll never forget one of them said, doctors used to pay you when you got sick or something along the lines of that. You know? Like, hey.
I'm your doctor. And if you're not feeling great, then, you know, that's on me. And, boy, if that's accurate, has that changed, obviously? But
We don't do that anymore?
Yeah. Yeah.
I you know, this person I was talking about had to go to the you know, eventually go to a GP and say, look. This is the thing I've been doing. And they were scared to go tell the doctor. And I said, listen. They work for you.
You're hiring them. Like, I was like, what are you worried about? He said, well, I don't wanna get in trouble. I'm like, get in trouble from who? I'm like, you're an adult.
Like, there's no trouble. You didn't do anything wrong. You did you made a decision. You took care of it on your own. And now you're saying, alright.
You are not there to ask permission1:11:27
Well, I I think I found an answer. Let's all get in bed together here and make this work for me. I I I it was interesting that there was there was an adult who thought, oh, I can't go to the doctor and tell them what I've been doing. What if they're mad at me? I was like, what if they're mad at you?
I couldn't possibly care less what they think. That's not the point of all this. It's Yeah. But that's it. It was an overwhelming feeling for them.
Just you know? I I don't I don't wanna get in trouble. What if this hap like, what do you think is gonna happen? I don't know, but I don't want anything bad to happen. I'm like, what just I I I don't know what to say.
I said if the doctor has a bad response, you know, leave. I also said you're not there to ask for permission. You're not there to apologize. You haven't done anything wrong. This is you're an adult.
You don't need anybody else's, you know, you know, advice. You're here telling them what you need. And then they went and did that, and that worked just fine. All that Yeah. All that anxiety around it was completely unnecessary because they found a reasonable doctor who said, oh, is that what's happening for you?
That sounds much better. Let's do what Yeah. Let's do better for you. You know? But just as easily could have bumped into one who was like, no.
You broke the rules. Yep.
So Well and, I mean, think about the rule breaking. Oh my gosh. If I how many endocrinologists or nurse practitioners within the office would be handing out personal cell phones? You know? And I obviously didn't wanna abuse it, but the fact that I could say in real time, okay.
It's happening. And she was asking questions, we're troubleshooting. And, she said, yeah. Let's come in this week for, you know, for a blood test. And I thought that's that's all it took is that we're giving him many doses of glucagon so he doesn't go too low to keep him from possibly having another seizure, when a blood test could simply rule in or rule out, you know, what's going on.
“Maybe you look at the CGM too much”1:13:15
And he had been tested for many other she was like, let's just run everything I can think of. All autoimmune. But celiac was the only one that came up
Pop.
As a heightened.
Listen. If your rules are keeping people in a poorer health situation, you're gonna have to reevaluate the rules a little bit. You know? So Yeah. And I I I don't I I mean, I don't know.
But it just it I I don't have it in me to be frustrated today, I guess. But this is easily could've got me ranting and raving on another day. Oh, I am super happy to hear that your son's doing well. I I just it is really fantastic. It's absolutely heartwarming to see somebody put five years worth of effort into getting there because I think a lot of people give up along the way or take that doc.
That doc that nurse's advice, maybe you just gotta stop looking. Whatever that that sentence was. Terrible sense. Yeah. Whatever that sentence was, a lot of people will use that as an excuse to stop or an off ramp to give them to cut themselves a break.
And that does not change the fact that the child or whoever you're trying to help in that situation is living in a dire situation and need needlessly.
Yeah. Yeah. And it was sort of like yeah. I mean, I look at that. You know, maybe you're looking at the CGM too much, and I thought, oh my gosh.
That CGM has kept us safe. I can't tell you how many times. Thank goodness for a CGM. I don't I don't know how we would have done this prior.
Not as well.
Yeah. And so I'm thinking the one thing that is keeping us safe and the judgment came from that, I I just I yeah. I I guess I I kept a lot in. I probably should've said a lot more at the time. And it's funny because I think about if I would've talked to you with the in the midst of all of this versus now.
Like, I've moved on, and I I try to share as much of our story as I can so that maybe, like, somebody helped us, we may help somebody else down the road, especially when you're in a situation where you're not feeling help. And if we would have been in a much smaller town or city, a rural area where we used to live, we would have been a little bit more limited on on, you know, who was trying to help us. I'm just glad we had multiple opportunities, you know, with where we live now. So
Yeah. No. I am too. I, I'm gonna ask you if there's anything we didn't cover or anything I didn't ask you before we stop, but I feel like you did a really good job of explaining this.
Five years of not letting it go1:15:40
Oh, thanks. Yeah. When you live it and you experience it and it's been everything. It's been all me for five years. It's so easy to just retell now, so I appreciate the opportunity.
Well, no. And I wanted to tell you too, I guess, I'll end on this. Yours is a name that I recognize from the past, but it was weird for me to see you pop up now. And I I appreciate that because you were saying a few years ago, you if you look back, you would have seen me all over the board. Like, I recognize your name.
Yeah. Yeah. I bet you do.
Yeah. Yeah. And so and to see you, like, years later pop onto the podcast, I was like, oh, this will be interesting. Like, because, yeah, I would have like, it wouldn't have wouldn't have surprised me if a couple of years ago you would have reached out, but you didn't reach out in the middle of it. You reached out after you kinda came through the clouds a little bit.
Well and I didn't know if it was us. We had been told so many talk times, like, you know, we think part of this problem is basically you and your husband as caregivers, which I knew wasn't true. And so with not having you know, as soon as you say, hey. I think I'm seeing this. You know, how long since your diagnosis?
Six months. Well, nobody's gonna believe you. Six months. Even though we had lived and breathed and did so much more with type one in six months than many other type one diabetic families did. I just didn't feel like I had the experience nor did we have an answer.
I do feel quite confident now that we have figured him out, at least for right now. And so I am on the other side of it. And I was just thinking before I I came on with you today that I don't know when the last time I posted was. It it could be many, many months or maybe more than a year now because I feel like we're in such a good safe place, but I look for people who have similar situations. You know, we seem to be getting a stomach bug a lot.
Immediately, I comment. Are we sure it's not celiac? Well, we were tested at diagnosis. I know, but it can come on at any point. At diagnosis, Cooper was fine.
His number was totally fine. He was not a celiac. Yeah. But that came to play pretty soon after his diagnosis, you know, looking back. So
It is nice of you to hang around and try to do that for somebody else. It was really awesome because somebody did it for you. Yeah. You know? Like, the that person who did that for you was probably probably in a very similar situation as you had been in and got through it and thought, I'm just gonna wait around and try to help another person.
So
Yeah. And it was a real simple comment. It wasn't, like, real long and drawn out. It was just like, this screams celiac, and I think he needs to be retested again. And for some reason, it hit.
It's funny. That comment and one other comment from the Facebook group and well, we were troubleshooting cannulas, and those ended up being our two big pieces in Cooper's story, celiac and cannulas. 100%. Yep. Oh oh, and I should say, actually, insulin that you know the results faster.
I do not think Cooper can do something like Humalog. He's been on Lyunjif and Fiosp now for two and a half, maybe almost three years. We need that because that helps us see quicker what kind of day he's going to have. So I should I should say that that's a big deal too. But that was changed pretty quickly, and we didn't really have much up against us when it came to that.
But the other comment was trying to figure out, like, is it his sight? Like, what is going on? And I think a lot of it all kind of, you know, came together and created issues for Cooper. But there was a gentleman on there who was an older gentleman who commented on one of my posts, and he said, you know what? Forget about it.
You're gonna you're gonna be changing his site every two days because we do change every two days for Cooper. You're he's gonna be doing this for the rest of his life. You can sit here and try to say, like, is the site good? If it's not great that you can't get his number down, change it and move on. And I was like, that's great advice.
Yeah. So that's what we do now. And my husband still sometimes wants to troubleshoot. You know? Like, is it?
Who cares? And there and he he flat out said, there's gonna be times you're gonna change it and realize, was it the site? Okay. Who cares? You know, like, buy extra so that you can move on.
Why are we wasting all this time trying to figure it out? Give him a fresh, clean, new site, and move on. And so we do that.
It's like wanting to hold your breath, jumping in the pool, sitting on the bottom, and then running out of air and going, I don't know what's wrong. Why can't I just hold my breath better? And then someone comes along and says, why don't you stand up? And, you know, you go, oh, that's a good idea. I'll just stop trying to hold my breath.
Perfect. Yeah. Now it it sometimes it takes, you know, an experience, but sometimes it just takes the wisdom of time for someone to say, I think you're I just think you're looking at the wrong thing there. I'm also listening to your story and wondering how many poor people over the years and the decades were told that they were brittle and maybe had celiac. You know?
You know, after looking up that definition, that was a hundred percent us. And I kept I kept saying, we have brittle diabetes. And, of course, endos don't ever wanna hear that because they're like, no. That just means poor management. Honestly, that's a term that's sort of graduated out since CGMs, and you can really follow numbers.
And I said, well, we're that. I mean, whatever that is, that's what we are.
It feels like it. But but then, yeah, then you look long enough, and you find the answer. And there it is. I I I listen. I, generally speaking, agree that I don't I think brittle means something's not working that you just don't know about.
If something or something's working against you that you're unaware of and the point that the CGM shines a pretty bright light on that is a valid point. But it doesn't mean anybody that people always get their answer or can figure it out. Like because look at you. Like, just like with your thing, everything's right in front of you. It takes a long time to put it together.
Mhmm. You know? And to to to, I guess, solve the puzzle and and then go have the have the nerve to push the button and say, okay. This is it. I think this is what we're supposed to do based on all these random things that I've seen.
So, anyway, it's a lot of effort on your part.
A 100%. And everything in my life with anything that's you know, where you're like, okay. Gotta figure out how we're going to fix this. It's always just been a process of elimination. Mhmm.
That's the easiest way to somehow get to an answer, and which is why I was really pushing for a blood test because I thought, man, we could figure out pretty quickly if this is our problem. Why wouldn't we do it? And so I do think that that's a big a big piece of it is you just keep trying. Something will click. It took us five years to get here.
Five years. Mhmm. That's a long time compared to what people said, oh, but, you know, a year in, and you're gonna be great, and we weren't. So it doesn't always work that way. You just have to keep trying different things, listening and troubleshooting.
Yeah. I'll tell you that if this happened to you today for the first time, I would tell you to open up a a chat in one of your favorite whatever your favorite large language model is and just say, I'm gonna talk in here about health. We're having a lot of odd problems happening. I'm trying to see if I keep coming back here and telling you more details if eventually we can figure something out. And I bet you if you went through your process and type I if you went to a chat GPT prompt right now and then
That's exactly what I was gonna say.
Yeah. And take and take and take everything you said to me today and just put them put it in order. Put in the first thing and said, have a child that's this old and has this going on. What do you think it could be? It might say, I don't know.
That's not enough enough, you know, information. Then come in and take the next piece that you figured out and drop it and say, well, now I figured this out. And then I wonder if it wouldn't take three or four pieces to put together for that thing to go, oh, your kids, got silly. Yeah.
Without a blood test. It would know. Yeah. For sure. Yeah.
I just it's interesting. I would be curious to wonder why, and I guess it's just because everybody's different, why some people with gluten who end up celiac have issues with blood sugar swings and why some people don't. Yeah. I I don't know why that is, and maybe they don't really know why. But we couldn't ignore it.
Without the blood sugar swings, he could very well still be eating gluten today. We might not have any idea why we can't get him
It could be
know, without stomach cramping and stuff. Yeah. Yeah. So the blood sugars really sped up the process even if that was over a two year span. But
Well, listen. I mean, I'm sincerely telling you. Like, I I'm I personally appreciate as another parent listening to somebody who did not give up because I persevered through some through some things that have happened to my kids where even my own family is like, will you leave this alone? And I'm like, no. I'm gonna figure this out.
Yeah. And then Mhmm. You know, we did. And, you know, there there's no thank you at the end, but, that's fine. And I Yeah.
But then you go then there's, like, a real sense of, like, oh, I saved like, there's a there was a thing happening to a person that's not happening to them anymore, and their life is now better because of it. And that that makes the time feel really, like, well spent to me.
So I've had a couple friends throughout this process say, you should have been a doctor because you have the piece that's missing in some offices is that you care. You see everything as we're gonna figure this out. I don't know that I would have been smart enough. But Well You know, that's a really good compliment. And I I would hope that any caregiver or parent, if you're just not getting what you think you need for your child, don't give up.
Just keep there's somebody out there will listen. Somebody out there will help. And sometimes it comes in forms that you least expect. You know, I never expected that comment to send me to yeah. I need we need to get him retested.
And if that means leaving an endocrinologist, then then that's what we do. It's okay.
Yeah. I and I'll leave I'll leave my plug here for it. The Juice Box podcast private Facebook group is really fantastic if you wanna join it and you're not in it right now. It it's well worth your time and effort. It's well worth making it through being on Facebook.
I know some people are like, I'm not on Facebook because Facebook sucks. I don't disagree with you. I'm just telling you that, I made a real I made an oasis inside of Facebook for you. You should go check it out. It's free, and it's really valuable.
So, and I appreciate
Appreciate it.
No. No. You're very nice. I appreciate you coming on and talking about this with me. I'm gonna say thank you.
And, if you hold on one second, I have a couple questions for you, and I can let you go. Okay. Thank you so much, Kyle. Today's show was sponsored by Tandem Diabetes Care, the Eversense three sixty five, and touched by type one, who you can learn more about on Facebook, Instagram, and at touchedbytype1.org. Head now to tandem diabetes dot com slash juice box and check out today's sponsor, Tandem Diabetes Care.
I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with a tandem Mobi system. I'd like to thank the Eversense three sixty five for sponsoring this episode of the juice box podcast. And remind you, if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM. Eversensecgm.com/juicebox. One year, one CGM.
If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and deliver straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the juice box podcast.
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