The Healthy Celiac Podcast
Hosted by Certified Health Coach, Belinda Whelan, who specializes in follow up care for women with Celiac Disease.
To find out how Belinda can support you, visit her website www.belindawhelan.com and while you're there be sure to download your FREE eBook '11 Mistakes People Make Living Gluten Free'.
For collaborations, please email me info@belindawhelan.com (no MLM opportunities please. 😊)
The Healthy Celiac Podcast
Get Your Spark Back after a Celiac Disease Diagnosis: Interview with Author Rachel Marie Martin Ep. 170
Ever wondered how a mother's intuition can make all the difference in a child's life? Rachel Marie Martin's gripping story about her son Sam's battle with celiac disease is nothing short of inspirational. As a mother of 11 from Nashville, Tennessee, Rachel recounts the heart-wrenching moments of Sam's failure to thrive, repeated illnesses, and an agonizing misdiagnosis. Discover how a friend's intervention led to the discovery of Sam's condition, and why Rachel believes that parental advocacy and maintaining a detailed health journal are crucial for accurate diagnosis and treatment.
Join us as Rachel sheds light on the daily realities of living a gluten-free lifestyle in a world brimming with gluten. From managing Sam's resilience to utilizing modern tools like apps for easier condition management, Rachel’s journey is filled with both challenges and triumphs. Learn about the importance of self-advocacy in educational and professional settings, and how a supportive community can make all the difference.
This episode is a testament to overcoming adversity, finding joy in small victories, and setting a positive example for others navigating similar challenges.
To connect with Rachel, visit her below
Website - https://findingjoy.net
Facebook - Finding Joy Blog https://www.facebook.com/findingjoyblog
Instagram - https://www.instagram.com/finding_joy
Order Rachels new book on Amazon Get Your Spark Back: How to Find Happiness and Reignite Your Life: Rachel Marie Martin: 9781962435048: Amazon.com: Books-
Find out how Ultimate Celiac System can support your Celiac journey here
https://belindawhelantraining.com/ultimate-celiac-system
Wish you could get gluten free meals on the table fast that the whole family will love? Check out Meal Plans Made Easy
https://belindawhelantraining.com/gluten-free-meal-plans-made-easy
Join my free community and grab your copy of 11 Mistakes People Make Living Gluten Free here https://www.belindawhelan.myflodesk.com/11mistakes
Check out my Daily Health Tracker here
HEALTH TRACKER | The Healthy Celiac (belindawhelan.com)
I am so happy to be featured in Feedspots Top 10 Celiac Disease Podcasts
https://blog.feedspot.com/celiac_disease_podcasts/
And I would love to connect with you on Instagram thehealthyceliac
All right, welcome back to this week's episode. I'm so excited to talk with Rachel Marie Martin this week on the show, and she has a big family which I'm super excited to learn more about, and one of her sons has celiac disease. So welcome to the show, rachel. It's so great to meet you and have you on today's episode.
Speaker 2:I'm super excited to be here, so thank you for having me.
Speaker 1:Yeah, pleasure. So whereabouts are you located? Just so everyone knows who I'm talking to and where.
Speaker 2:All right, I live in Nashville, Tennessee, oh beautiful. So people are always like really, you live there. I'm like yes, I do.
Speaker 1:Tourist city. Yeah, other side of the world to me.
Speaker 2:Yes, yes.
Speaker 1:It's great to connect and that's why we love technology I do I love technology?
Speaker 2:Yeah, yeah.
Speaker 1:So, first of all, I'd love for you to share the story of your son, sam, and how he was diagnosed with celiac disease.
Speaker 2:Okay, well, I have to back up because it was actually in 2011 and I didn't even really know about celiac disease at that point in my life. I knew I had done some wheat elimination diets of my own prior to that, so I kind of knew about elimination and all of that. But my son he, at about 9, 12 months of age, started just failure to thrive, kept getting sick all the time and didn't know what was wrong and towards the end. So he was diagnosed in January and in December I had a friend that came up to me and said you know, something's not right with Samuel and I, you know, when you have your child with you all the time, it's kind of that slow fade. Like now I can look back at pictures and go, oh my goodness, how did I not see his eyes? Like, how did I not see it? But he um, he just refused to, he stopped eating. Basically is what happened? He had zero interest in table food and he almost reverted to being back to being a newborn, went back to breastfeeding and all of that, and I I didn't know what was going on. So finally, I I kept taking him to the doctor and because I have a very large family. Samuel is the seventh of my own biological seven children, so I kind of knew something wasn't right.
Speaker 2:But the doctors kept saying you know what, he's in a large family, he's exposed to a lot of stuff, it's probably nothing to worry about. And they kept misdiagnosing and they prescribed him to take miralax and I really think that was the straw that broke the camel's back, because for samuel, he had a lot of intestinal bleeding and once he took that, um, he just it was excruciating pain. And so a friend of mine said you need to take him to the hospital. It was actually her father-in-law was a doctor and he said you need to take this child in. And I did, and when we got there his temperature was well below normal. And even then the doctors were like you know, it's probably nothing, like I just kept proving myself. They're like what did he eat? And I said, well, he had a little bit of a sandwich. And myself, they're like what did he eat? And I said, well, he had a little bit of a sandwich. And then they would say, well, if you think it's celiac disease? Because my friend's dad said you need to test him for this, why'd you give him sandwich and I'm like, well, I don't know what it is, you know I'd have to fight.
Speaker 2:And the thing that got him admitted was he. They gave him a juice box and he drank the juice box and immediately he went straight and like as a board and screamed in pain and the nurse was like, oh my goodness, like she witnessed it, she goes, I need you to do this again. And she went running down the hallway to get the doctor and the doctor came in and I was like Sam, you have to drink again. And the child, he doesn't want to, but he did. And then the doctor realized something is terribly, something is actually wrong, and what they realized was his entire intestinal tract was completely raw at that point. So when he drank the juice it just was like acid on it. So it I was admitted and had the celiac panel, which all the numbers came back high, and then we actually were sent home and then the next day they said we need you to come back immediately for endoscopy. And then he had the endoscopy and then they verified it.
Speaker 1:Yeah.
Speaker 2:And that was the start of the journey.
Speaker 1:Wow, just amazing. And do you feel like, as a parent, you really have to stand up for your children, don't you? You really have to advocate for them and be their voice, because clearly your son was not thriving, he was in pain, he was struggling. But yet the medical system just thinks it's fine.
Speaker 2:Yeah, I've written a lot about it and I've talked about it. I was really grateful I had a good friend that came with me, because they can. You can kind of get beaten down, like the questions and all of that, and then you start to question yourself Maybe, maybe I'm not, maybe it's I'm making a big deal out of it. But I really had to be an advocate, especially because about a week prior they had done all the allergy panel tests and so on the tests it came back that he wasn't allergic, which I love telling people. It came back he's not allergic to wheat. So the doctor's like, well, he's not allergic to wheat. And now I know they're totally different, but it was. You can't rely just on that.
Speaker 2:So I did learn to keep a journal and that journal was one of the things that really helped me. So for about six months of his life when he started getting sick to afterwards he actually ended up seeing an immunologist too I kept a very detailed journal of when he'd get a fever and all these things. And because of that journal the doctors at the University of Minnesota because I was living there at the time said that one of their standard protocol for children that come in with recurrent fevers. Now will be to test for celiac, because Sam presented with that.
Speaker 1:Wow, that's amazing, isn't it. Yeah, I was so like okay, yes, it's making a difference, isn't it, and helping others Like that's a big step. Wow, that's fantastic, oh goodness. So, all of your other children have been screened, you told me, and at this point they don't have celiac disease. So how does that play out in your household? So there's 11 children and you and your husband?
Speaker 2:Yes, we have a new blended family. Yes, which children and you and your husband?
Speaker 1:Yes, we have a new blended family yes, which is amazing. Like two for mom. I've got three kids. I don't know how you do it, you just you do what you have to do is what I say yes, so do you have gluten in your household? How do you make that work and keep?
Speaker 2:them safe. We do, yeah, we actually do, Especially when well, part of the thing that I've learned about about gluten free and celiac and is that for a lot of families it's incredibly expensive. So when Samuel was first diagnosed, the budget didn't allow for me to make the entire house gluten free and so I was very, very diligent. We had a separate toaster, a separate every. I mean everything was separate, and I would say that our house converted to 90 to 95% gluten-free. And Samuel's older brother, um Elijah, was. I would say he was like the protector. Anytime Sam would get anything, he'd come running into the room. Is it gluten free? And everyone knew, because they all saw him at his lowest, they all knew to like step up the game. Now, uh, when I was, I would say that that 90% has kind of carried through now. So even with my other kids, like their exposure to gluten, it's so much less than the average person.
Speaker 1:Yeah, yeah, definitely. And as a teenager, how does he cope these days? Like is it just normal to him? Does he feel like he's missing out? What's his kind of view on it? Or is it just? It's just what he has to do to feel good?
Speaker 2:I think it's, it's he'll, he'll tell you, it's all he knows. There's a benefit and and cause. I've seen it with like I will be like oh, there's things I really miss because I don't eat gluten at all Cause you remember it's different.
Speaker 2:I do. I remember so, like one time there was this really great gluten-free baker that was making croissants and I'm like, if you can nail that, I'm going to stand in line for two hours. And he did. It was phenomenal. But for Samuel, he's just not experienced that. Elasticity of baked goods is what.
Speaker 2:I think I would say he is an advocate. One of the things that I'm the most proud of raising a child with celiac disease is raising him to be a complete advocate for himself, to the point of if we go out to eat he handles it all himself. Now, of course I listen, you know the mom part, but he does handle it like ask all the questions, and that just comes from learning it, and you know. The other thing is is he knows the the outcome if he isn't gluten free. So that that helps too.
Speaker 1:Yeah, that's wonderful, isn't it? My son was four when he had to start eating gluten-free, so he's got non-celiac gluten sensitivity. But he was so sick he was the same, just looked under the eyes and just he was awful. So he's a little bit different because he remembers having all these amazing foods but because he felt so sick he doesn't ever want to eat it, like he never sneaks things or says that he wants to eat gluten because he remembers how awful he felt. So I think interesting, it is interesting how that plays out. But, yeah, that's so good that he he can advocate for himself and you've taught him, which is huge, because I do see a lot of parents who take the reins and they don't, you know, let their children take control of their celiac disease and you know he's going to leave home and that's going to be an amazing part of his life that he can do that for himself. So good on you.
Speaker 2:Yeah, thank you. I always say that you're living gluten free in a very gluten full world and it's how to navigate that in there without it being something that's negative. And, like I, what I've learned from sam is he just sees the good. I remember one time that was a christmas and there was all these. It was a table full of cookies and I, the mom, was like he can't have any and someone brought out a box of and remember this is a decade ago of box gluten-free cookies not quite as amazing as they are now, but, but he was just thrilled. He was thrilled and I thought what a good life lesson, because he sees what he can have and he's grateful for that. So that part's cool. And you know now as a teenager, there's so many apps too. There's so many resources for him, versus me with my big book at the grocery store.
Speaker 1:It's changed, hasn't it? Yeah? And how does he navigate with friends? Does he have a supportive group of friends that you know he he can feel like he can just be completely himself and comfortable around? Does he find that that's a big part of being a teenager?
Speaker 2:I think he does. I think he has no problems with his friends. I think I'm the one that's always a little bit more like, not with his friends, but with school. Like if it's a pizza party after school, I always want to try to fix it. Or if it's something before a football game where they're going to do it, if I kind of step back and let him manage it, it gets taken care of. Or like the teachers will make accommodations for him. Maybe he can't have the pizza but he can have something else. And that part is, you know, as a parent, you just, I just didn't want there to always be like, well, I can't eat that, I can't eat that. But we've just learned to navigate it. And for a long time schools didn't do treats for birthdays, which I loved. I was like this is great, this is so good, because I never had to worry. But we would have frozen gluten-free cupcakes in our freezer for birthday parties and just bring them along.
Speaker 1:Yep, that's what we do too, and it works. It does, it does.
Speaker 2:Same chocolate cupcake once again, every time.
Speaker 1:Yep, it does. Same chocolate cupcake once again Every time. Yeah, but that's it.
Speaker 1:You just make it their normal and they become accepting of that and advocating for himself, and if he can do that now, he's going to go out into the workforce one day and be able to stick up for himself. And I speak to so many people that say that they feel left out at work and have to coach them through. You know, you've got to stand up for yourself. You've got to speak to your management and your HR department and make sure you're being looked after. So you know, sam will probably be amazing at that one day yeah, I think it.
Speaker 2:It really is important for us as parents to model it. Um, I, I, in the, I ended up getting him, uh, like a 503, I think. The education thing where the school had to make sure that his classroom was accommodating for gluten free. Yeah, so that it wasn't different. And what's amazing for me about that is I shared with you about this before we started that I have a niece that has celiac disease and my sister watched what I did and she's got the same thing with her, with my niece. That's happening and it's really powerful because I know that it it creates change. And then, um, even just three houses no, actually about five houses down, there's a mom that I met at the grocery store yeah, I'm like you're my neighbor, and then I looked in her cart and I said, wait, you have a lot of I like recognize the gluten-free goodness, and then I found out her daughter has celiac disease. So I think that it's there's more of us out there than we think.
Speaker 1:Yes, it brings people together, doesn't it?
Speaker 2:It does, it does. I was like I like those crackers.
Speaker 1:It's always nice to be able to find something in common with a fellow celiac. So yeah, yes, yeah, it's always nice to be able to find something in common with a fellow celiac so yeah, yes, yeah, beautiful, so true.
Speaker 1:So you, you, you know, over the years you've gone through some major challenges and some major life changes and come out the other side and, just you know, shared your story through a couple of books, with a new book on the way, and you share a lot about how you found joy in your life. Do you want?
Speaker 1:to share a little bit about that story, because having a child with celiac disease is challenging absolutely. I have absolutely no doubt that that is a huge challenge for people, but you've gone through some adversity and you have just, you know created such a positive life for your family and you are a role model to hundreds of thousands of people around the world. So do you want to share a little bit more about you as well, because I think you are All right.
Speaker 2:Well, you made me very teary. That was very kind. I appreciate that. The best way I can describe the joy part it's going to be a celiac story, but when I grew up, my grandmother used to make unbelievable Christmas cookies. Like I'm talking, 10 after 10 of Christmas cookies.
Speaker 1:And.
Speaker 2:I used to sneak out and get them and it was part of my story. So when I became a mom, I took my grandmother's recipes and I started making all these cookies and then, the year Samuel was diagnosed, I thought, well, I'm just going to, I'm going to make these cookies, and every single one it was like the cookie pan was just one blob of whatever. None of them worked. None of them worked, and I remember just this devastation. It was such a simple thing, but it was this family heritage.
Speaker 2:And a friend of mine said you know, rach? She said you'll never make the cookies like your grandmother did, but you can figure out a way to make them in the future that are just as amazing and fast forward to maybe about seven years after Sam was diagnosed. And I'm on my counter rolling out my grandmother's Moravian gingerbread cookies, gluten-free and Sam is sneaking a piece. And I thought she's absolutely right. And so I think with life, that's part of life is being willing to say I can't. I have to move forward. Maybe it's not going to be the same, but it can be, as it can be good. So in my own story, I went through financial problems and I went through a divorce and then I was a single mom and you know, sprinkled in there was health stuff and I've learned that joy is really found in being willing to say and look for something good in the moment now, even if it's, it's rough, yeah. And when you have that posture you start to see things yeah, yeah, that's beautiful.
Speaker 1:I I hope you don't mind, I just want to read something that I took off your website last night. Okay, I thought it was powerful. So sometimes you have to let go of the pictures of what you thought life would be like and learn to find joy in the story you are actually living. This speaks to my soul and I just think it's so powerful and so true because you know so many people are out there going woe is me and focus on the negative and they don't focus on the good.
Speaker 1:They're not focusing on you know what is the positive of having celiac disease. What is the positive of having celiac disease, what is the positive of feeling better and and moving forward with your life. So that is everything and that is what I love to teach and share with people. So I love that you are such a role model for so many people with this finding joy and and sharing that story with people.
Speaker 2:Thank you. Thank you that. That quote's very important to me. It was written on a very challenging moment in my life. I was with one of my children, was going through kind of an estrangement and, you know, no one ever plans for the hard stuff. I always say nobody get diagnosed with something, and then when it happens, we're like well, how did that happen? And I think that we all have this story. We all have these moments of I never saw that coming and we're given the life in front of us now, the story that we have left, and it's up to each of us to figure out. Okay, well, how can I find joy? How can I make this good? How can I see just like Sam did years ago, how can I be grateful for what I can have versus being annoyed at what I can't?
Speaker 1:Yeah, yeah, definitely, and that's a big part of your upcoming book. Is that correct?
Speaker 2:It is. It is, in fact, I share the story more deeper about the that quote. Uh, in my book it's in, I think, the first or second chapter. So my book is get your spark back and it was inspired by really thousands of emails that I would get from people saying, well, how do I get my spark back? And a lot of people will get to that point, that transition point, but I think COVID did that too for many of us where we're like whoa, who am I now? What am I going to do? And the question is always how do I get my spark back? And it's always possessive. Everybody knows they have one and it's never how do I get a spark. It's always how do I get it back? And I think that's powerful, that yearning to get it back. Because when you have that spark, that's when happiness and joy and all those good emotions and opportunities open up. So the book is the answer to how do you get it back.
Speaker 1:Fantastic Sounds, amazing.
Speaker 2:Thank you, I know I'm very proud of it.
Speaker 1:I'm very proud of it, and you should be Anyone that writes a book. I just take my hand and just think it's incredible.
Speaker 2:You should tell me that when I'm in the middle of it.
Speaker 1:Oh my goodness so this is your third book, is that right?
Speaker 2:It is. It is my third book. Yes, yep.
Speaker 1:Fantastic. So I am definitely going to be getting a copy and reading that one and I see motherhood is definitely one of those things that people spark, kind of goes away a little bit because they're so focused. You know, we as women are so focused on our children.
Speaker 1:We're so focused on what they need, that we tend to put them before ourselves and that happens. You know, worldwide, not just talking. You know people that have a lot. We're talking about people that don't have much. They will still give to their children before themselves. So lots of mums listening I'm sure will get a lot out of your book. And people that have got celiac disease.
Speaker 1:I think this can help them see the positive side and feeling good about themselves, because right there is a lot of feeling down after a diagnosis and going down that downward spiral that we don't need to be going on.
Speaker 2:So no, no, and I remember for me with Samuel, because when he was so sick, almost being which is kind of strange when I think about almost grateful I knew what it was. Yes, because he was so terribly sick and terror, like I just think a hundred years ago I don't think he would have made it and just being so grateful, I knew what it was and I knew what I could do. And that's power, and that's the power I think about when you, you look at it and you think you know what there's so much I can do. That's great, and every time we we talk about it that way, we're actually bringing awareness to it. I look back at my own story with him and, as a younger writer on the internet, I shared a lot of his story and, in the sharing, helped other people go. You know what I know of this person whose child was diagnosed.
Speaker 2:Would you run that panel? And I'm a big advocate for it. Can you just run the panel? Just run the panel, yeah, and I'm a big advocate for it. Can you just run the panel? Yeah, just run the panel. Yeah, you're already putting, you're already poking them. That's right. Just one more, one more test, one more test.
Speaker 1:That's exactly right exactly, yeah, amazing, amazing story. Love it. Is there anything else that you'd like to share or talk about that you think could be beneficial?
Speaker 2:uh, well, I think that part of when you, if whether it's not having your spark or being like to share or talk about that you think could be beneficial. Well, I think that part of when you whether it's not having your spark or being diagnosed with celiac or raising a child with it the biggest thing that a lot of us deal with is feeling alone. And I'm here to say you're really not alone. You're not alone on those days when, like I can remember crying in the grocery store because the almond flour that I was buying was was like five times the price of the regular flour and and just feeling completely overwhelmed by the whole process. And the thing is is you'll get through it. It's not immediate, it's just one step after another step. It's it's like those cookies one attempt after another attempt. Until now it's the new normal and I'm so grateful for it. So you're definitely not alone and you definitely will get through and there can be a lot of good.
Speaker 1:Fantastic advice, beautiful, all right. So if people want to connect with you, where can they find you? Where's the best place to connect and share all the things?
Speaker 2:All right. Well, you can find me on the internet, at findingjoynet, or on Facebook at Finding Joy blog, and all the details are there. So if you heard this, you feel free to send me a message.
Speaker 1:Yeah, wonderful, and we'll pop all the links below in the show notes and you can pre-order Rachel's new book now. Is that correct?
Speaker 2:That is correct. It releases August 27th and I'm very grateful for those pre-orders. So thank you.
Speaker 1:All right, we will pop a link to the pre-order form as well over on Amazon so you can check out Rachel's new book, but go and check out her previous books as well and, like I said, I'll pop all the show notes below, all the links below in the show notes, and you can learn more about Rachel there. And thank you so much for listening. Thank you so much for your time. Rachel Really appreciate it. Thank you.
Speaker 2:I appreciated it too, thank you, thank you.
