Transcript: Learning to Cope With Celiac Disease in Infants

This is a text transcript from The First Time Mum’s Chat podcast. The episode is called Learning to Cope With Celiac Disease in Infants and you can click on the link to view the full episode page, listen to the episode and view the show notes.

Helen Thompson: Your journey as a mum is often a stressful one. Well, imagine to add to the stress and overwhelm of your new parenting journey, discovering that one of your children has celiac disease. This is what mum of 2, registered nurse Laura Tate, faced on her parenting journey and she quickly needed to find ways to structure a life that met her family’s health needs.

During our chat, you’ll hear Laura talk about her journey and the challenges she and her family faced, very much from the coalface, and how she structured a life to accommodate them all, including tips and symptoms to look out for to help identify whether your little one has GI. (Gastrointestinal) tract issues.

Suggestions on a range of celiac friendly flours and ingredients that are must haves for your larder for their diet. The massive adjustment that you need to make in your home environment to ensure that they cannot ingest gluten and much, much more.

Hi Laura and welcome to First Time Mum’s chat. I’m delighted to have you here today and I’m looking forward to hearing all about your family’s Celiac disease journey and how you have adapted your lifestyle and found ways to cope with it. Firstly, can I get you to introduce yourself and tell us about you and your background?

Laura Tate: Yes. Awesome. Thank you so much for allowing me to be here with your audience, Helen, and just to have a conversation, right. Being a first time mum can be scary and then add in different dietary restrictions or diagnoses that your doctor might’ve told you. That’s what I do, I’m Laura Tate, I’m a registered nurse and a certified natural health professional and through my work and being a celiac mom myself, when my daughter was diagnosed at 2, I realized there was a gap.

When we finally figured out what was going on with my daughter, that there was nothing out there of how to implement a gluten free diet, how to help your child thrive in a gluten filled world when they can’t have gluten and I say gluten because celiac disease is an autoimmune disease that is triggered from eating gluten and gluten is that protein that’s found in wheat, rye and barley. Now wheat is one of the ones that have to be listed on the label and some countries actually do say that gluten has to be listed on a label, but here in the United States, it doesn’t. In Canada, gluten doesn’t have to be listed as well.

There’s so many things that gluten is found in that can be stressful for anyone with celiac disease, but add that to a mom who already has her plate full with multiple children or work, or everything that life throws at them as being a mom, then add into a child that’s just learning how to live amongst this world from siblings walking around that don’t have any dietary restrictions to going to kinder care or different things and there’s so much that goes into it that our doctor just goes, Hey, go gluten free. That in itself is great, but they don’t consider the emotional side of what happens when your best friend or the other child at the play date can have these crackers, but your child can’t and they want them or having the lunch at daycare or having to come up with meals that you never would think of because think of those yummy pastries, think of those croissants and those bakery breads and just stopping on your way on a road trip or on a family vacation. you don’t usually think about What are we going to eat but when you have celiac disease, it takes up so much of the world around you in a gluten world.

Our world is so full of food, right? We socialize with food and we meet up for playdates with at lunchtime or holidays and different things in that regards that having a child that doesn’t understand why their favorite foods they can’t have anymore and why. So Joey gets this, but she can’t have this and all those different things that celiac can be so impactful, but yet we got a 3 word direction from our doctor, don’t eat gluten, okay and they don’t explain why.

Helen Thompson: It’s not just the gluten, it’s everything else in it, because they can’t have oats, they can’t have cereal, they can’t have things like porridge and it’s tough, because as you quite rightly say. I think when we chatted, you said that it’s even in Play Doh.

Laura Tate: Yes.

Helen Thompson: So you can’t even let your child play with Play Doh. How do you, as a mother, cope with all of that? You obviously have to adapt your life to support your child.

Laura Tate: Right and that’s why I’m here. That’s why, one, it’s the awareness that sometimes that colicky baby or the child that just isn’t growing, there’s different symptoms, there’s over 200 symptoms actually of celiac disease. I think the first part is working with your doctor or understanding, after listening to your podcast for so many times and you’re okay, my mama’s gut is saying something’s different, something’s wrong, I’m not sure what and working with your doctor to understand, is there something else, is there G. I. (gastrointestinal tract) issues? So G. I. issues I’m talking about, is there belly distension, is there explosive diapers, is there lethargy, like, are they extremely tired, are they not able to keep up with their peers or their siblings? Are there rashes? Our daughter, we thought maybe she’s just car sick. We looked at, is there a virus going around and stuff and she’d never have a fever and she would vomit, but it was never directly after a meal. Sometimes it was, sometimes it was in the car, sometimes it was just out of the blue. She just had this big distended belly and actually she looked like she was 9 months pregnant and a third world child. She was happy, she was playing with her brother but just something was different with her.

You’re in the backyard we’re playing at the water table and you seriously look pregnant. How is that possible and not understanding. I was a nurse. I was like, okay, yes she’s small for her size, I’m not the biggest woman here, I’m five two. So being able to go, okay, something’s different, now I need to have a conversation with our doctor. We had a wellness visit and It was a lot to process because I was like, oh dietary, Okay, because they did an allergy panel and so they ruled out strawberries they ruled out, all the common different allergens that kiddos have.

Helen Thompson: Does celiac come up when you do those allergy tests?

Laura Tate: No, the doctor actually has to consider it or rule it out. It’s not a common allergen fact. When you look at the nine different allergens or you go for a poke test with the allergen, where they actually take the grids and actually poke the little back and see if they have dust or they have different allergens. So they specifically have to order it and for us, it was a blessing in disguise that the nurse practitioner we worked with that day, added it the last minute. Cause we did abdominal x ray to make sure there was no blockage. They had an allergy panel, they had the normal blood count to see if there was anemia or anything that could be caused.

It was really interesting to get that phone call. Hey, her celiac panel came back and like celiac, what’s celiac, because we really don’t hear it. In the last few years, I’ve heard it a little bit more, but I’m tuned into that word, where as a new mom I wouldn’t have thought about what is celiac.

I heard of gluten sensitivity or with all the different bad diets of not being able to eat milk or dairy sensitive, you know, all these different things, but never really understood what celiac disease was and so when I heard that her numbers or her blood work came back for celiac disease, I had to go to Google.

As most people get like searching the internet, what is this? Huh? And you look at the symptoms you’re going through. That must be it, that’s probably what’s going on. Then having to go see your gastrointestinal doctor. So a doctor that specializes in the gastrointestinal system and then having to put your little baby, your child under anesthesia to get a scope to understand because real golden standard across the world is actually not only a positive blood test for celiac, which is in addition to an allergy test but an endoscopy that actually is a camera that they go down the throat, they look at the esophagus, see if there’s anything going on, they make sure there’s no ulcers or anything in the stomach, but it’s the small intestines.

So they connect the tube that goes from the stomach all the way through into the large intestine. So the small intestines is what actually absorbs nutrients and that is the villi, the little finger like projectiles that are all along the lining of the intestines and with celiac disease, when we eat gluten it actually triggers an inflammatory response. It triggers an immune response. Our bodies like heightened and because what is this and they start attacking its own cells. With that, that villi is being almost bashed against like waves. It constantly is being irritated and causes erosion, kind of like the shorelines and when that happens, your body doesn’t have enough surface area to actually absorb.

So you don’t have the ability to absorb all your vitamins and your nutrients and that’s why a lot of times our kiddos are failure to thrive or malnourished. So with that malnourished, you also have anemia and then you have the effects of anemia and it’s that domino effect that celiac is the root cause that can lead to, that has migraines and behavioral issues and GI issues and so many different things.

So when you finally get that diagnosis, they do that scope, the endoscopy and they send the labs and the biopsies and come back, hey, yep, it came back positive. It’s almost like grief because you just went through something’s wrong with my child and you’re thinking worst case scenarios, you know of cancer or something else but then you get celiac disease. You have answers right Helen and we’re understanding. Okay, I have answers now, oh wait, you mean I can’t just bake our family traditional meals. Every Christmas we have these buttery rolls or the coffee cake. Now it feels that limitation or how do you take their favorite foods away?

Helen Thompson: I was gonna say that with the favorite foods. I know a little bit about celiac because I’ve got a very close friend who’s got celiac and I’ve come across it from other people but I was thinking that when you talk about your diet and what you need to do and how you need to change that, you mentioned there the coffee cake, now is there a way that you could make a coffee cake with tapioca flour or maybe quinoa flour because I’ve started doing that. I’m not celiac but I am reducing a lot of my gluten intake because I don’t like having a lot of gluten.

I do feel that if I have too much, it causes mayhem with my digestion. So even with the simple things like we mentioned earlier about playdoh, and the simple things like that that kids love to play with and love to do, how do you integrate that into your family and how do you support your child in that? You’ve mentioned all about Celiac and what it is, but looking at a first time mum, what support can you offer to that mum?

Laura Tate: Yeah, so the reason why we use wheat flour like as an all purpose flour, gluten gives it that stickiness, it’s that binding agent, it gives that fluff. Without gluten, we have to kind of make up for that. So there’s not just one flour typically when you’re making a loaf of bread or sometimes what you guys call biscuits or we call cookies, sometimes we have to have a mix of flour of starches and grains to have that right consistency. I have a recipe that I use and give my clients that just calls for rice flour to make Play Doh. So we can substitute that one to one out. However, you can’t just sub out rice flour for an all purpose flour because the consistency is different.

Helen Thompson: I use a lot of quinoa flour or chickpea flour or even tapioca. I don’t know what you call tapioca flour, arrowroot flour, maybe. All those things combined can actually help, can’t it?

Laura Tate: Yes, so that’s the whole thing about gluten free and celiac, in my cabinet right now for if I ever want to bake, I have a combination flour for that can represent an all purpose flour and in that is rice flour, sorghum, arrowroot, some places use corn, I don’t like to use corn just because it irritates. So it has potato flour, potato starch, and that’s my all purpose that I’ve grown to like, and I used to make it on my own. I’m getting all these flours and making the right ratio of it for the starches and the volume. However, I also have in my cabinet right now I have tapioca flour, I have arrowroot, I have xanthan gum, there’s a sweet rice flour that’s needed in some of the recipes to make that white flour equivalent. There’s the brown rice flour, I have almond flour. I’ve tried cassava flour, which is actually really good, and found lots of different recipes in that but then add into is, especially if their gut isn’t healed or there’s already irritation, they’re more sensitive. So sometimes kids and even adults in general, like you said, you feel a little bit better without the gluten, is they react sometimes to chickpea flour. I know too much chickpeas, it irritates me and I don’t feel as good. So I limit that.

Helen Thompson: The friend I was mentioning, I was making something for her and I always ring her up and ask her. I said to her, is chickpea flour okay for you because I’m making a quiche and she said, no, I can’t have chickpea at the moment. So it’s interesting that you say that. So you’ve just got to be so careful, don’t you? It must be really tough for a mum, who’s going through this, who doesn’t know.

Laura Tate: Right and we’re just talking here and the doctor said, go gluten free, but yet we’ve just talked so much of all the different ins and outs, and that’s just the surface layer. I mean, pancakes, using a griddle and making little pancake sandwiches with a little syrup and butter, the batter has to sit a little bit more because it needs to absorb that fluid. The flour doesn’t bind as well, so you have to let it sit, so it actually creates the liquid and you know, that domino effect that unless you trial and error and learn these things, you don’t know.

As a mom, that’s going through this and that support structure, because it’s scary, all your go to items. Like when you are doing the dishes or you’re trying to get ready in the morning, what do you tend to give your child? You give them a toy to play with, you make them have breakfast or you give them a snack because they’re constantly hungry. Now you have to rethink all that you do. We talked about the Play Doh because Play Doh would be good for fine motor skills. It’s the finger paints. Sometimes finger paints have gluten in them. Honestly with celiac, it’s what we ingest and as an adult, we learn that we don’t put our fingers in our mouth, right? We also don’t eat out of the dog dish. We don’t pretend to be a dog. With a child, they’re learning about the world around them and how do toddlers, how do little ones learn? They learn by experience. They learn by feeling. The immune system works by crawling around and putting their fingers in their mouth and that’s exposure that creates the antibodies in their system, right?

Helen Thompson: Yeah. Absolutely.

Laura Tate: We used to drink from the hose. We used to play in the mud and now that doesn’t always happen but for a celiac child, it’s the crumbs on the floor, it’s the dog food that you never thought about. That’s what I’m here for is to help think about all those ins and outs of having a child learn and adjust and how do we do that because a child looks up to mom and dad, right?

our children are guided through their village of support and so being able to walk that through with first time mums or just families in general that have this huge diagnosis makes all the difference in the world to know that you’re not alone and how to talk to your friend, right? Your friend is probably overjoyed that you even called or thought to ask her, Hey, is it okay, I’m making a quiche, can you have this?

Helen Thompson: I’m very conscious of that and I’m also very conscious of it because I’ve come from a child care background. I think I shared this with you when I first chatted with you that I was once in a child care center and he wasn’t celiac, but he was allergic to certain things. I knew what he was allergic to and what he couldn’t have and I was on my own in the room.

Laura Tate: hmm.

Helen Thompson: My colleague had left me and I was on my own with about 15-20 kids at lunchtime and I had to segregate this particular child and unfortunately, I turned my head for 5 seconds to get a fork for another child, and he’d helped himself to somebody else’s plate. I had to inject him with an EpiPen and everything and the colleague came back and said, what are you doing, why is that child sick? I said, well, I turned my back for five seconds and he’s eaten it, so I need to call his parents and it was tough.

I also hear parents, like today when I went to pick up a child, it wasn’t Celiac, but the parent said, he’s now 5 or 6, so he’s a little bit older, the parent said to me, oh, my child can’t have this and can’t have that. He’s old enough to say, if somebody gives him something, he will say what’s in that, I can’t have sesame seeds or I can’t have milk. Can you tell me what’s in it before I eat it because I’m not allowed to have x, y, and z. He’s old enough to say that but a child of two and a half, they don’t have that developmental vocabulary. Although they know that they can’t have it, they don’t have the vocabulary to be able to share that knowledge and that’s the hard part.

You can’t just say, I’m sorry, you can’t have that. So I guess in your own house, you don’t provide any wheat or gluten or anything so that it doesn’t matter what they help themselves to because you know it’s safe, but it’s when they go out.

Laura Tate: Mm hmm. Yeah, and it’s huge because I teach about our village because it takes a village to raise a child and you think about those in your household and then you think about that circle that’s a little bit bigger and it’s the grandparents or the neighbors, the close friends that the parents have and they learn and then having that supportive structure. Sometimes with this diagnosis, because it’s the crumbs that matter, it’s as small as one hundredth to like five hundredths the size of a raisin, that’s how much that a celiac kid can have of gluten in a day. So sometimes it’s the overwhelming feeling of what do I feed my child and how can I trust somebody else to do it if I’m still struggling with it, so they shut down and they might not want to go to your house, Helen, or accept a treat that you made because they’re not sure how it was made and then having to bridge that gap. We said when we went into this, if my daughter has celiac, all of us in our household will be gluten free and that lasted about 12 hours and I say that because, yeah, like, we got home and my husband’s like, wait, cinnamon rolls. What, wait, what about going out? How does this work? I don’t want to deprive our son of this. So we figured a way that would help our two and a half year old to be safe, but also not to have that battling of siblings or having the frustrations of what do we feed them and how it works.

So most of the time our dinners are gluten free and my daughter has learned we put everything on a shelf that she can reach is gluten free. However, anything that might be what something the boys have or dad, my husband works at a grocery store, trying all the new treats, so he puts them up on the very top shelf. So my son now will go up there and get something but just knowing and creating the environment. Cause some people see it in black and white, nope, everybody has to eat this way, everything.

Helen Thompson: Yeah, it doesn’t always work that way, though, does it?

Laura Tate: No, it doesn’t. And so that’s where a biggest thing is how does your family work? You’ve come across different mums throughout your journey and what you do, Helen, you realize that not two families are the same. It’s more or less how do you work within that? How do you support them where they’re at to make sure that they know that they’re loved, they’re cared for, they have a support structure to know that the moms are doing the best they can and how to inspire them and to give them the tools and resources so they can enjoy the moments and enjoy that time with their child because they’re only little for so long and if mom’s always stressed out, how is that affecting the home life?

Helen Thompson: If you do what you’ve mentioned, you’,re teaching that child to always ask because they know that mum’s put this out for me, they know that mum said I can’t have that and then when they get older, you can have a chat to the child and say, look, this is what you’re not allowed to have, what alternative would you like, can we work this out together? Starting them as you say when they’re young, to put out what they’re allowed to have, you’re not telling them that they can’t have what their brother’s having, you’re just saying, right, okay, these are your things, these are your brother’s things. You choose from this pile and your brother can choose from that pile. So that you’re still sharing and communicating and socializing with your child at dinner time or whatever it is but you’re still supporting the child to still make her or his choices.

Laura Tate: Yes, for sure and that’s huge because like we’ve talked about at 2, they comprehend some, but not in a way that needs to be safe. Yet instilling those skills is huge because they’re going to live with this the rest of their life and who were they learning from, they’re learning from mom, they’re learning from the people around them and they’re learning how to trust and the support. Hey, I can go to Aunt Helen, or I can go here and they know me. There’s still times my daughter, as I put her plate in front of her goes, mom, is this gluten free? Is this mine?

Sometimes I want to react of why she’s asking me this, I’m mom, but then we’re still human, we still make mistakes.

Helen Thompson: So she’s obviously aware of how it affects her if she’s asking you. She’s obviously aware of how her body at that young age is being affected.

Laura Tate: Yes and also that’s how I kind of trained her, because I know I wasn’t going to be around her 24×7, so taking the time and showing and being an example of what needs to ask or how we ask, to never take anything for granted because of that. So she’s learned over the years how to advocate for herself and being able to support her in that.

Helen Thompson: How old is your daughter now?

Laura Tate: She is 8. She’s a fierce 8 year old.

Helen Thompson: Yeah, so from two and a half to eight, she’s learned the experience from what you’ve done. I was just thinking about this while we were talking. Is celiac hereditary?

Laura Tate: Yes, so Celiac there’s a genetic component and really, you can’t have Celiac if you’re not a genetic carrier. However, there’s people like myself, as a genetic carrier. I’ve had my genetics looked at, or epigenetics back when I worked in a certain clinic, and I’m a genetic carrier, however, I do not have celiac.

There’s people that have that gene, but never express it. It’s thought that a stressor in their life, whether a sickness, whether it’s a situational stressor, something triggered that gene to turn on and they haven’t figured out how to turn it off. So, once that gene is on, it continues to express that way. So there is that genetic component to it. However, just because you have that gene does not mean you have celiac disease.

Helen Thompson: And you can’t grow out of it. It’s not something you grow out of. It’s something you have for the rest of your life?

Laura Tate: Correct. It’s not the desensitization that can happen from the Nate process or from desensitizing as they do sometimes with nuts or different allergens because it’s not an allergy. Allergy is related to the histamine response.

Helen Thompson: Yeah, yeah.

Laura Tate: That creates the anaphylactic or the hives, the rashes. You can have a wheat allergy on top of having a celiac disease, which is an autoimmune disease and autoimmune disease is the immune response system. So they’re not the same in that regards.

Helen Thompson: Yeah, most of the kids I’ve come across as either nut allergies or whatever else, if they even touch a nut, even if they don’t eat it, or if they give somebody a cuddle and they’ve eaten nuts for lunch or something, and they come up and give you a hug, you can then pass that on to them. I know that from my child care background, I used to get so frustrated, because I love my nuts, and I love eating things like that, and cheese, and all this kind of stuff, and of course, when I went to work I had to be very conscious of that. I couldn’t have a nut for lunch, I couldn’t have milk for lunch because I knew that I’d pass that on to that child.

It was a scary thought. A lot of childcare centers in Australia and I know in the UK, I don’t know about the States, but they don’t allow people to have nuts, they don’t allow people to have milk or anything like that, if they’ve got a kid who’s allergic to it. You’re saying that’s not the same with Celiac, because they can have all those things and they can’t do anything if they’re having a fit, if they’re sick or whatever, there’s not a lot you can do, you’ve just got to let them be sick, you can’t give them an EpiPen.

Laura Tate: Correct, it just has to take time and there’s different ways to support the body if they do come into contact. The first time my daughter was, gluteny is what we call it. So when they ingest gluten, we call it gluteny and it was horrible because she took a bite out of an animal cracker that wasn’t hers and one, trying to figure out what she had and why, from a 3 year old’s response. So trying to figure out, okay, what’s going on, why is this different, what’s happening and nonstop dry heaving, vomiting, and it’s more or less, we had to just give her snuggles and make her as comfortable as possible, give her fluids because she’s losing fluids and there’s different other ways to help support the body in that and that’s what I go in my program a little bit more as well as like, it’s not if, it’s when it happens and you touched on the allergen of you couldn’t go to the daycare or the child care center with dairy or nuts because of the allergens, right?

Well, that’s another process because so many times the medical field or those that are, oh, celiac is just about what you put in your mouth. So it doesn’t matter your skin care routine, it doesn’t matter the bubble bath, but that’s one of the things that’s an issue is with children what do we do in the bath? We blow bubbles. We sometimes drink the water. So, being aware if your child is drinking the bubble bath, maybe that should be gluten free, even though it’s not food.

Helen Thompson: Does celiac disease affect in the same way? If somebody has eaten wheat or eaten gluten, and then they give your child a hug, or you say the bubble bath or whatever you’re saying or even the play doh. If they’re playing with play doh and they’re touching it and they’re feeling it but they don’t put it into their mouth, does it absorb through the skin as well.

Laura Tate: No, it doesn’t, the molecules are too big to go through the skin. It’s the Play Doh underneath the nails, and they go to go eat their snack after because, let’s be honest, little ones do not wash their hands very well. I worked with an adult that would fix autistic kids their lunches and stuff and she had celiac and I said, how do you combat that?

She goes, I’m just very careful. I don’t touch anything outside their meal and I go wash my hands, make sure I get under nails and that. So when it’s my turn to eat, I don’t have that. However, I remember when my kids were little, that they would give me kisses on the face, right? So if I had foundation on, and they’re here kissing all over my face, as they’re learning how to kiss or that texture, sometimes, as silly as this is, my, my daughter licked my face, right?

I’m like, oh no, hoping my foundation doesn’t have gluten in it. So that’s the other aspect we don’t think about as adults, that lotion that you just put on your arm and then here comes your child and rubbing their face all over. You just played with Play Doh, you played with paints and then you lick it.

I remember growing up and it was always that running joke that when you go to school, you eat paste and that paste sometimes can have wheat in it because you always have that kid that is that sensory texture person or hey I wonder what this tastes like and if that’s your celiac kiddo, then you need to approach things a little differently.

Helen Thompson: Yeah, you’ve obviously advocated for your child, which I think is so valuable to do. Having you on here has been very beneficial, because you’ve put it out there, you’ve let parents know that it’s something that you, just need to slowly communicate to your child and just get on with in your life..

So we’ve shared a lot about this and I could talk to you forever about celiac disease. If somebody, if they discover their child’s got celiac and they want to get in touch with you, how would they go about doing that?

Laura Tate: Yeah, for sure. I am on Facebook and Instagram. You can find me on Instagram as rn underscore celiac underscore warrior underscore mama. So they are in celiac warrior mama, same thing on Facebook. I am that way. There’ll be there in the show notes as well, I’m sure. Actually, I Googled myself the other day just to see where I’m at and see what comes up and you put Laura Tate Celiac, I actually pop up as well because I’m in the directory for the Celiac Foundation as one of their support systems or professionals. So you can find me at the Celiacfoundation.Org or Celiac.Org as well.

Helen Thompson: Okay, well, thank you Laura, for being here. I really appreciate having you on, and thank you for sharing your pearls of wisdom. It’s been great talking to you.

Wow, Laura shared some great tips and insights about Celiac disease and her experience of it in her family. It was particularly interesting hearing about her coping strategies, having one child of two with the condition. I could really sense what a huge adjustment this must be to families, particularly at a time where they are going through huge changes already in their home environment.

I’ve included links to Laura’s social media, including her Mama’s of Celiac Kids Facebook group that she runs. If you’ve had your little one diagnosed with celiac disease, then you won’t want to miss Laura’s free guide titled ‘Do’s and Don’ts for a Newly Diagnosed Celiac Kid’ and you’ll also find a link to that resource in the episode show notes, which can be found at MyBabyMassage.net/podcast/141.

I share each episode on the First Time Mum’s Chat Instagram page, and you’ll hear me chatting live with folks I’ve interviewed from time to time. Please support me by following me and I look forward to meeting you during one of my lives.

Next week, I’ll be talking with sleep coach, Meredith Brough, about what she refers to as baby centered sleep, which supports your child’s development and well being. Be sure to listen to this episode when it comes out next week, and please subscribe to First Time Mum’s Chat via your favorite platform, so you can get quick and easy access to all our episodes when they are live.