2:00 Kathy Fogata’s and Kai’s diagnosis story
Gluten Libre Website
Rebecca: It seems like nobody is really interested in trying any of my stuff, so I just…
Andrew: Welcome to the GFMagazine Podcast with Andrew Cordova and Rebecca Black. Join us as we discuss how to make living gluten-free just a little bit easier.
Hi there! Welcome to the GFMagazine Podcast, episode no. 2. Andrew Cordova here with my co-host, Rebecca Black…
Andrew: …and special guest, Kathleen Fugato from Gluten Libre. How are you guys doing?
Rebecca: Kathy, thank you so much for being on our show.
Kathy: Oh, you’re welcome. It’s good to be here.
Rebecca: You get to bring the mom insight today.
Kathy: Well, I do that well. I have six kids.
Andrew: Whoa! I didn’t realize you had six kids.
Rebecca: We only know about the Celiac one.
Kathy: Right! We only have one Celiac. [Inaudible 00:00:48] Him and I are both Celiac and then, the rest of the kids, nobody else is.
Andrew: It’s Kai, right?
Kathy: Yes, Kai. He’s thirteen.
Andrew: So today, we’ll be talking about gluten-free summertime social situations, living gluten-free. So Rebecca, why don’t you start us off?
Rebecca: Sure! So we all know summer’s coming up obviously. The holidays are coming up. We’ve got 4th of July, Memorial Day, Labor Day. People are getting married, having weddings, going to picnics and all those fun social situations that should be easy, but aren’t always for those of us who are living gluten-free.
So Andrew and I obviously can bring the adult living with the disease perspective from it, but we wanted to bring Kathy on to talk about all things kid-related to this as well since you have kids at summertime, they want to spend the night at friends’ houses, there’s birthday parties, pool parties and all these different social things that are going on with your kids. We wanted to get her point of view and perspective on how she’s dealt with that and the best way to cope with it. So why don’t we just get started?
Kathy, obviously Kai, he has Celiac disease. Why don’t we start like this. Kathy, why don’t you give us a little bit of just kind of who you are, your background, how he got diagnosed and you got diagnosed and then we’ll go from there?
Kathy: Okay! Well, Kai was diagnosed about four years ago. He had a typical – well now, they’re typical if you know about Celiac disease, the failure to thrive, getting sick all the time and couldn’t figure it out and just kind of withering away, always sick. We couldn’t figure it out. And finally – gosh! It was probably like two years. He was really going downhill. We were at the doctor’s office. I’ve already tried everything. He’s not lactose intolerant. He’s not this. He’s not that. And he goes, “You know what? Let’s try Celiac Disease.”
Rebecca: Let’s try it. Let’s just try it.
Kathy: Yeah! I said, “Okay!” And then when we back, that’s what it was, Celiac Disease. It actually was a huge relief because then we knew we could fix him with a diet.
He slowly started getting – it didn’t happen right away. He’s still really skinny and small, but the stomachache thing, he constantly had stomach pain all the time. I mean, it was just every day. I feel bad now because I used to get mad at him like, “You just don’t want to go to school.”
Rebecca: That was my entire life just so you know.
Kathy: Okay! So you…
Rebecca: But I also didn’t want to go to school. So there was a constant struggle of hating school and being ill for me.
Kathy: You know what? With him, too. He hated it. He didn’t like school. And partly, the reason is I think as he got sicker, he started to hate school more and more because in his head, nobody is believing him, he’s sick – the whole thing.
But after a while, the diet started really working. He would have his days where he’d get glutened or whatever and he’d have diarrhea all day and he couldn’t go to school. That’s when we took him out of school.
I home school him now with the charter. It’s Golden Valley Charter. He does it online. It actually worked out really well because I can totally control all his food. I don’t have to worry about cross-contamination or him cheating all day.
I don’t have that much problem with him cheating because he get so sick that he doesn’t want to cheat. But that’s worked out really well.
He’ll go back to school next year. He’ll be in eighth grade. We’ll just send him back and see how it goes, but I think we’ve got such a good routine down and everything now. It took a while. Getting him trying out different foods and different ways of cooking and ideas and ways to keep food on him when he’s out and about and whatever, we’ve pretty much got that down. That was pretty hard at the beginning.
Oh, you were asking my Celiac Disease. When I was – oh, my gosh! Twenty-two or twenty-three, I was diagnosed with rheumatoid arthritis. I was always sick and tired and achy all the time. I went in to find out what it was and that’s what he said I had. And then a few years after that, I was diagnosed with hypothyroid. And so I take my little pill every day and whatever anti-inflammatory medicine I have, I use. I tried Humira and all those.
Well, gosh! I think it was maybe seven or eight months ago, six month ago, I was at the doctor. My nurse practitioner, I had a new one. She said, “You know what…?” She was asking how I was doing. And she says, “Have you ever been tested for Celiac Disease?” I said, “No?” After all we’ve been through and all the research, it’s like, “Why didn’t I do that knowing it had to come from somewhere?”
And so we did the test and I have Celiac Disease. And she said, she told me that [error in recording] a long time ago, I might not have had the other autoimmune issues if I had been gluten-free that whole time.
Rebecca: Well, yeah. I completely got rid of my hypothyroidism from going gluten-free.
Kathy: Oh, wow! Yeah! See, so now…
Rebecca: I never went on meds.
Kathy: Yeah. See, I have to take the little levothyroxine every day. I have to have the hormones and all that, so it might be part of that as well because of my age, but she said probably it wouldn’t have happened if you have been going gluten-free the whole time.
Rebecca: Yeah, my levels went from I think over 5000 when I was first tested. And then six months later, they were about 2700 or something like that. And now, they’re normal right around like a thousand or 1200 after a year.
Kathy: Right, right!
Rebecca: It took me a year strictly with diet, but I just wanted to see if I could do it with food and I did.
Kathy: Right, right! Well, I wanted to see if I could do it with just food, but I’m afraid to go off the pill because I feel so bad when I don’t take my thyroid pill. I’m so tired and I can’t afford to be so sluggish and tired. I feel like a big lump.
But I think part of it too is because I had a hysterectomy a while ago, so I had no female hormones, so I have to take hormones. But my thyroid probably would have kind of gone kaput after that as well, so I don’t know.
Rebecca: So what are some things that you’ve struggled with with Kai as far as social situations?
Kathy: Oh, gosh! When you brought up spending the night with friends, that’s been probably one of the toughest. He only has one friend who’s mom really, really – maybe two, that really understand that Kai cannot have – it’s not just some diet he’s on because we’re…
Kathy: Yeah, health food [inaudible 00:09:02].
Rebecca: Health hippies?
Kathy: Yeah! Those two parents actually have special shelves to Kai and utensils that they use to cook for him, which is so awesome when he spends the night. They really totally understand it. But otherwise, other parents, if I let him spend the night, I not only have to explain what it is, I have to send food with him and make sure that, “Please make sure he doesn’t touch other food…”
[error in recording] someone’s houses, he’s learned to read labels so well. He’ll tell them, “I can’t have that” or, “My mom gave me a bag of food.” That’s normally how I deal with it. That was a hard one.
That one and he goes to summer camp every year. But they’re really good too because they have a chef there. You put down if they have any sort of food allergy or issue and they’ll accommodate that.
Rebecca: I had a mom call in my show, my Pretty Little Celiac show this last week and she said that her son – I think he was around the same age as Kai – she could not find a camp that would accommodate him, that guaranteed that they would try their best to keep him safe.
Kathy: Yeah. See, it’s a Christian camp in the desert that he goes to and he goes to my brother and his cousins every year. I can’t believe how awesome they were. It’s called Iron Wood Camp. I couldn’t believe how awesome they were. You could send their own food with them as well – you know, like goodies they might not have, so he can have some fun stuff. I would send with him some cake mixer cupcakes so he can have those whenever they’re having that day.
Otherwise, they accommodated everything and made sure there was no cross-contamination because there’s other kids there with peanut allergies and that kind of thing. So they were really, really good about it.
Rebecca: Is that the only camp that you had looked into sending him to or were there others that you had problems with?
Kathy: No. Well actually, that one was the only – she’s right probably because that’s the only good one. There’s another one, a skateboarding camp we wanted to send him to, they didn’t even care. They said, “We can’t accommodate that” and that was that.
Rebecca: That’s so lame.
Andrew: Was that one Woodward?
Kathy: Yeah, it was…
Andrew: Oh no, I was just wondering if the camp that he was trying to go to was Woodward?
Kathy: Woodward? Oh, I have to ask Brian. I can’t remember which…
Andrew: Oh, okay. Thank you very much.
Kathy: Yeah, it might have been because they didn’t care at all. They were just, “That’s that. We don’t do that” and okay. It was a little frustrating. But yeah, that one, right away, no problem. They were really into it. Actually, if you wanted to call the cook there and talk to him and make sure that they understand about the cross-contamination and all that good stuff. So they try to keep it as safe as possible.
Andrew: What was the name of that camp again?
Kathy: The Christian camp?
Kathy: Iron Wood.
Andrew: Iron Wood, alright. I’ll make sure to link to that in the show notes because like you guys said, there’s probably not very many that do accommodate, so this one sounds like a really good one.
Kathy: Oh, yeah. It’s really good. And you have fun. It was so nice to be able to relax, not to worry about him getting sick or anything. That’s the hard part of sending your kid out to spend the night somewhere. Anywhere he goes, even if I have to tell the parents, I always send a bag of food with him. We have it all. Everything else [inaudible 00:12:57] where he takes food with him wherever he stays the night. So that’s how we deal with it.
Rebecca: What about the school now that he’s going to be going into eighth grade? Did you do the 50 – is it 504?
Kathy: 504. Yeah, that’s what we were going to look into. That was part of our problem from last year. When he was in elementary school, I would bring him his lunch every single day. I would just go to school and bring him lunch. And that’s just how it was.
Kathy: Up all the way until 7th grade. And then, he started having more issues because he always had more freedom with his food I guess. He was just getting sick all the time, so I knew he was probably getting glutened somehow.
Kathy: So he was absent a lot. And even with the doctors and everything, you get in trouble. They don’t like that here. Even if you get a doctor’s note that says, “He doesn’t have to go to the doctor every time he get sick. It’s something that they can handle at home,” they still give you the truancy notice because they were absent too many times.
So that’s why we’re going to start looking into the – with the 504, they can’t do that. So that’s what he will be doing next year. Brian’s actually researching that a little bit more. But yeah, he was absent so much that finally, I just took him out and put him [inaudible 00:14:33].
He’s actually doing really well with it. Because of Celiac Disease, he was having a lot of trouble in math with focusing.
You know, we had a teacher in fifth grade that was telling me he had ADHD and we had to put him in medicine. She just kept telling me that the whole time. That was when he was first diagnosed. “I’m not doing that.” I said, “No, no, no. He doesn’t have ADHD. He has Celiac Disease and that affects their ability to focus and to think.”
Imagine how you would feel if you were sick all the time. You’re sitting there and trying to concentrate and…
Rebecca: …and you’re going to poop your pants.
Kathy: Yes! You’re scared you’re going to have diarrhea and you don’t want to do it and go to a bathroom at school, you know? Or if your stomach hurts all the time. You’re sitting there and you’re scared to eat. It got to the point where he was scared to eat because he knew he would get sick.
And then you say you’ve got this skinny little kid who’s not eating, so obviously he’s not getting right nutrition which affects how you – all of it!
Rebecca: Right. Oh, yeah.
Kathy: [error in recording] understood what we were going through was the principal. She was a huge help to us, kind of Kai’s advocate. The teachers were, “For sure, put him on a pill. I’ve got 30 kids in my class… 35 kids… and I can’t…”
What she was saying was she couldn’t handle a kid that was different because she had too many other kids to focus on, so everybody had to be the same and the pill would make him just like everybody else.
Andrew: Oh, my God!
Kathy: Yeah, that’s their mindset.
Rebecca: Doesn’t it make you wonder how many potential children have a disease like this and they’re just put on meds?
Andrew: Just masked with the meds, yeah.
Rebecca: …to put a band-aid on the symptoms?
Kathy: Yes! I would bet you 90% of them have some sort of food issue. If it’s not Celiac Disease, they have something. It has to do with their diet. It has to be.
Rebecca: That’s just amazing. Well, I think a lot of the problems that are coming up in this world – I mean, that’s a whole other podcast, but…
Rebecca: I mean, just the food that everyone is eating. My background is in children’s services. I spent seven years in children’s services and I can tell you based on what people were eating and feeding their children for meetings that I would go to, I’m like, “Well, when you give them Mountain Dew for breakfast, how could you possibly expect your child to do well in a classroom?”
Kathy: Right, right! Because they’re bouncing off the wall. You know what…
Rebecca: Pop tarts and Mountain Dew. I’m like, “Well, that’s like 80 grams of sugar.”
Kathy: Exactly. Exactly. And I don’t have a problem with them treats once in a while. I’m not like what you were talking about, some health food hippie or anything, but you have to know better. People don’t get it. I know a lot of people don’t get it.
The food allergy thing is – you know, my oldest daughter, she’s 26 now and she had allergies and she was diagnosed with ADD her whole life. That never occurred to us. And now, I can’t talk her into getting tested. She’s an adult now. She’s like, “Oh, that’s not me… blah-blah-blah…” But I’m pretty sure she could, maybe Celiac Disease.
And my Mom. We know we probably got it from her. She died before we could find out, but when you look back on her whole life and all the problems that she had saying it was IBS or irritable bowel syndrome, I know she probably had CD.
Rebecca: See, I look at the mental health on my mom’s side. My mom claimed she got tested. I don’t trust her doctor actually ran the proper tests. He’s the one that told her that because she didn’t have diarrhea that she didn’t have Celiac.
Kathy: She didn’t have Celiac.
Rebecca: And so then when she pushed for the test, who knows what kind of tests he actually ran. He probably ran a blood test. I mean, she didn’t have a biopsy.
Kathy: Oh, okay. And that came out negative?
Rebecca: Well, she says that he ran the genetic test, but I don’t think – I don’t know. I don’t know if they actually did or not. He probably just ran like an antibody test or something like that.
Kathy: Right! I got you!
Rebecca: I mean, if you have a doctor that doesn’t even know that Celiac Disease is not just diarrhea, I can’t imagine that he understands what tests are prescribed.
Kathy: That’s true. He’s not going to understand the genetic part of it or – yeah, exactly. My nephew, we’re trying to get my brother to test my nephew because he has been –
And this is the other end of it, he’s been having issues with constipation his whole life. I mean, bad constipation where he can’t go for days and days and they’ve tried everything. I think they just don’t want to have to go gluten-free because it’s expensive. I mean, how sad is that?
Andrew: Wait, what did you just say? I didn’t catch that. You don’t think they want to go gluten-free because it’s expensive?
Kathy: Expensive, yes. Yes.
Rebecca: Well, people view it as expensive.
Andrew: Yeah, I know. Again, that’s another topic. They’re just a bunch of excuses that people make.
Kathy: Excuses, that’s exactly it.
Rebecca: Well, it’s a complete lifestyle change. It’s not as easy…
Andrew: It’s not just change of food, yeah. It’s not one thing.
Rebecca: My husband would go into anaphylactic shock for tree nuts. He’s been like that since he was two. He hasn’t had to change anything. I mean, I went and got allergy tested because I had no idea what was wrong with me. If they would’ve said, “You’re allergic to trees,” what am I going to do? Like not rub my face in a tree or live in a tree house?
Rebecca: I mean, for me, at least if you have an allergy, you know exactly what it is and it’s labeled typically like if they said, “You’re allergic to strawberries,” well then I just don’t eat strawberries. It’s so much more challenging than that, which is why I think social situations are so hard because people are uneducated about living gluten-free.
I mean, Andrew, you might get something different because you are doing it by choice. You’re choosing to live your life that way because you feel better and it’s helped you with your health issues. You don’t actually have to, but I think people even judge that worst than people who have Celiac Disease.
Kathy: Oh, they do.
Andrew: For me, personally, like I said, I don’t live with a bunch of people that are gluten-free or anything, so I don’t have like their – I don’t know, I usually just hang out with my family and friends that I’ve been friends with since forever, so they don’t really – I wouldn’t really say I get judged very much at all. And I have the magazine going, I have this podcast going, I’ve got a bunch of things going, so it’s kind of life, so I would say that they…
Kathy: So you don’t feel like you’re persecuted or anything?
Andrew: No, not at all. I don’t know, I just feel like I’m helped by the business that I’m running also. So it’s like, “Oh, he’s doing the gluten-free thing.” And then if they want to go and read something and like, “Oh, is this actually legit,” just this stuff I’m doing is enough behind me for them to be like, “Oh, that’s fake or something,” they’ll be like, “Are you serious? Go read the article in the last magazine, an article that a doctor actually wrote.” I don’t even say these things. They just already know that what I’m talking about is real, so it’s not fake.
Kathy: Well, yes. You’re an advocate. You’re just spreading awareness.
Andrew: Yeah. So I don’t really get that at all.
Kathy: You’re not running around like Miley Cyrus or, you know…
Andrew: No, definitely not.
Kathy: Yeah, yeah.
Andrew: Yeah, I know. I was just at a baby shower – what’s it like? Maybe about a month ago. And it was a friend’s baby shower and she had asked me to do the barbecue. I was going to do barbecue with my best friend. We went out and bought a bunch of meat that were going to be tacos and I guess I just talked about the social situation thing, whatever.
And we went over to my friend’s dad’s house. He had a huge backyard. So we started grilling. I threw down – what’s it called? Like really heavy-duty aluminum foil under the grill. I did that for me personally. I don’t know what the hell is on the grill before. I don’t want to go and try to sanitize it. And I know they probably only cook just meat on there and sausage or whatever, but I just didn’t want to have anything for me personally like any cross-contamination or have to do like some crazy work to make sure it’s clean.
So I threw down foil paper. I cooked the whole thing. No one asked me any questions. I’m usually the person in charge when I go cook or when I’m invited somewhere to a barbecue because I like to cook.
People know that I like to cook. Again, my friends and family does know like Andrew likes to cook. So they usually go to me for advise, “What are we going to cook? How much are we going to cook? What do we need? What we don’t need?” And basically, I was in charge of everything.
Me, personally, when I go to social situation like an outing or something, I usually put myself in charge and I’ve always done before.
Kathy: You’re in control.
Andrew: Yeah, I’m always in control. Well, I’m not going to say I’m always in control.
Kathy: You’re in control of the cooking. No, but you’re in control of the cooking. That’s actually a good idea. That’s really good. And a lot of people don’t like to do the barbecuing part and will go, “Go for it!”
Andrew: Yeah. No, for me, I like to talk to people. If I’m cooking the food, everyone’s going to have to come to me to talk. And then I had this one guy that came up to me – I’m totally not against anyone. I don’t hate anyone. I’m not against anyone’s views. He came up to me and he’s like, “Oh, this food’s really good, blah-blah-blah” and then I was like, “Oh, thanks!”
And then, we were talking like, “What do you do?” and I told him a little bit about what I do. And then I was like, “Oh, I also like to do like a publishing business on the side. I have this magazine called GFMagazine on the iPad.” He’s like, “Oh, cool!” He’s all like, “Yeah, I’m Paleo.” I said, “Alright! That’s cool.”
And then I asked him, “Are you just like Paleo to lose weight or do you have autoimmune disease?” or something like that. He’s like, “Oh, I’m just trying to get rid of my gut.” And then he’s like drinking a beer and eating some tacos.
And then I started talking to him a little bit more and I was like, “Oh, so do you eat Paleo when you go out?” He’s like, “Yeah, yeah. I order the gluten-free stuff.” And I’m like, “Oh, man…”
Rebecca: [Inaudible 00:25:21]
Andrew: Yeah, yeah. And then I explained to him. He’s like, “Well, today’s like a cheat day, blah-blah-blah…” And then I just gave him some more information about gluten-free. It’s not just a fad. I explained to him there’s a reason that people eat gluten-free before Kim Kardashian or whoever else ate gluten-free. There was other people that actually needed it for like a disease, Celiac Disease or for autoimmune disease. He’s like, “Do you have autoimmune disease? Do you have Celiac Disease?” I was like no. He’s like, “Well then, why do you eat that way?” I was like, “Honestly, if I were to eat like a hotdog bun right now, I’d probably crap my brains off for the next three days.”
He’s like, “Oh, okay. I understand. So you can’t just eat a little bit?” I was like, “No” and I had to give him the low-down on what gluten-free is. This is not just like – I told him, “my advice to you is not throw out the word ‘gluten-free’ when you go out to eat. Just being more cautious of what you’re saying because there’s other people that are going to go through the exact same situation that you are, but they actually really do need to be gluten-free.”
Kathy: Yeah. They can’t cheat like he said he’s cheating.
Andrew: Yeah! There’s no cheating.
Kathy: They can’t cheat, yeah because you get sick. Some people get sick off a little crumb. You’re right. They can’t just say that and say, “Well, today I’m cheating.” I taught my son he can’t do that. He can’t say, “Okay, I’m going to have some regular white Wonder Bread today because I feel like it.” He could get sick for a few days. Yeah, that’s actually a good point.
Andrew: Yeah. So back to the whole point, I usually put myself in control of the whole situation. That’s basically what I do.
I also like to take food that are really fun. For Easter, I make these little eggs. I always make them to be like doubled eggs that looked like actually little chicks. And then like for last year during 4th of July, I made a cake. It was a parfait kind of thing that looked like the American flag. I always like to make things that looked awesome and also tastes really good. It is going to be gluten-free. It’s going to be in a different section. It’ll be labeled.
I like to bring something really good and something kind of big that maybe everyone can try not just so I’ll have plenty to eat, but also to lighten the mood. If I bring something really good or something really cool, people will ask, “Oh, what’s in this? How did you make this?” and then I’ll tell them like, “It’s blah-blah-blah. It’s gluten-free. There’s no wheat. It’s made with ohm flower” or something like that. And it brings people’s guards down when you introduce something good or be extra nice. It’s a lot easier to relay information to people when they’re already in a good mood.
And if you can bring, like I’ve said, something fun that looks cool or tastes really good or is enough people to share, I feel like you can bring people’s guards down and they’ll be open to actually listen.
In my situation with the food, I swear I cooked 80 lbs. of meat. There was so many people there. It was the most amount of meat I’ve ever cooked in my life for the tacos. And the reason I was able to talk to that guy was because I was in control of the food, the whole situation. If I wasn’t cooking, I don’t think he would’ve been respective of what I was talking about as much.
So yeah. That’s my little thing. I always label my stuff. I always put my name on stuff. I put a label and everything or just totally separate like a different table. That’s what I do.
Kathy: That’s what we do. I give Kai when you’re talking about social situations, for instance, when they’d have the little parties at the school (you know, sometimes they’d have cupcakes at kids’ birthdays or whatever), I would always give one to the teacher ahead of time so Kai wouldn’t be left out [inaudible 00:29:13] for school.
If he went to a birthday – he’s thirteen now, but when he did – I’d send with him separate goodies like cookies or whatever. But I would send enough so other people could have them too and then he wouldn’t feel weird like, “Those are Kai’s cookies. Don’t eat… nobody can just eat… it’s not for anybody else.” And so I would send a lot more than just for him.
Family birthdays, I always make him a separate cake when we go my parents or whatever. So that’s how we do it too.
Andrew: Yeah. And this last Easter, I actually made – Easter also falls on my niece’s – she’s born on Easter. Actually, she was born on April 1st and we just celebrate Easter and just mash them together.
Her name is Nisa, so we call her N’Easter. She just found out she was dairy intolerant or lactose intolerant, so I made her like – actually, I made everyone a cake. I made a gluten-free, dairy-free cake just with like Betty Crocker Mix or whatever. And then I made like the whipped cream like with coconut cream and it was really, really, really good.
I made two, big enough for everyone there. Everyone was like, “Oh, can Nisa eat it?” I was like, “Yeah.” Everyone told him like, “Andrew made it dairy-free.” It wasn’t until the very end that like someone eating a piece of cake, my cousin, Daniela is like, “Oh, you’re eating a piece of cake.” I was like, “Yeah, I made it gluten-free.” She’s like, “Oh, my God. You can’t even tell.”
So yeah, there’s plenty enough for everyone. Simple things like that are good enough. It tastes just like the gluten-filled ones that people aren’t going to be like, “Oh, this is weird or it tastes gross” or anything like that.
Was I the other person that got dropped?
Kathy: No, I did too. I just got back on.
Andrew: Oh, okay.
Rebecca: Okay, I got it. Everybody here?
Andrew: Yeah, I finished talking.
Kathy: I know. I’m sorry, I probably missed like two minutes of it. I was trying to get back to you, guys.
Andrew: Oh, no. We were just talking about the cake. I was just saying how I made the cake. It was dairy-free and gluten-free.
Kathy: Okay, I got that part.
Rebecca: Sorry, I don’t know what happened.
Kathy: Anyway, we were talking about – God! I lost my train of thought, you know.
Andrew: You were talking about how you make enough cupcakes for everyone.
Kathy: Right! Right, right, right. Anywhere we go, I try to make it like you do. You made enough for everybody to try or taste or get an idea, so people don’t feel left out or…
Rebecca: Oh, you guys are nice. I’m like, “Here’s my food. Don’t touch that.” That’s what I do. It’s like everything is labeled. “Do not put any other utensils in this. This is Rebecca’s, ‘RB, gluten-free.’” All my stuff is just labeled.
It seems like nobody is really interested in trying any of my stuff. I did make a gluten-free mac & cheese in the crock pot for Christmas just because it was easy and I just threw it all together. If I make something like that, it’s very easy, I’ll share. But typically, I’m like, “This is mine and no one else can have any.” And everyone’s okay with that.
Andrew: So you’re coming from the whole – because I know (or I think I know) that you don’t even like to cook.
Rebecca: No, I don’t enjoy cooking.
Andrew: I totally enjoy cooking, so I would cook regardless if I was gluten-free or not.
Rebecca: I’d pay for everyone to go to Red Robin or something like that, but I…
Kathy: You know what’s so funny? You were talking about how big a lifestyle change it is to go gluten-free and how it’s forced me – I have a big family and I always hated cooking because it’s like such a mess to clean up because there’s so many people. But not now. Our family shrunk because the kids have moved out. I was forced to cook now, forced to make good thing. Still, it’s not my favorite thing in the world, but I think I enjoy it a little bit more.
But yeah, I was actually forced to cook because there are some things that I just can’t go out and buy. I’m cooking for everybody. So there’s things that I have to actually cook and not just go by. I was forced to cook. If I was single or not have any kids, I’d probably not be doing that.
Rebecca: We don’t anymore, but we used to have parties at our house a lot and invite all of our friends over and their kids and all of those sorts of things. Basically, for us, there were side dishes and like corn-on-a-cob and grilling out. No one actually is inherently unhealthy. No one was really horrible things.
Kathy: Oh, right! Right, right, right.
Rebecca: And so it was good because I could make – this was before I was diagnosed, but we would just go macaroni salad and a fruit salad and we’d have some kind of finger foods and things like that. All of that stuff is very easily made gluten-free.
Kathy: Right, right.
Rebecca: It’s so easy to make. I mean, a fruit bowl is gluten-free. If you mix some fresh veggies and you buy some brown rice pasta, make a gluten-free pasta bowl, the same way you would do – I mean, the only thing you have to make sure of is the dressing and the noodles…
Kathy: Yeah, exactly.
Rebecca: So all of that stuff could easily be made gluten-free. It’s just that when you’re at an event, if you’re at a party, it’s making sure people aren’t double-dipping spoons.
Kathy: That’s the hard part.
Rebecca: …that they’re not taking the spoon out of the dish that they brought with bread crumbs and then using it for yours.
Kathy: That’s where you come in and you’re labeling everything. It’s probably one of the things I probably have to be more aware of. I totally understand how you would just label everything for yourself. That’s the scary part, getting cross-contamination whether you’re going somewhere and your food is mingled with other non-gluten-free food.
Rebecca: My husband has a big family – not big, but bigger than mine. I mean, for me, it’s me, my sister, my stepdad and my mom. But over there, it’s cousins and family and aunts and uncles and stuff. At Christmas or holidays when we’re over there, I always get the first dibs. So I always go around, I eat whatever I want first with all the spoons that I want whenever I want and then everybody else eats after me.
Kathy: Oh, yeah.
Rebecca: They get their food after me. So it’s a way that, “Hey, if I want the cheesy potatoes and I don’t want anyone else to get any of them or to mix the corn flakes one with mine that may or may not be gluten-free, then I just make sure I get my portions first.”
Kathy: Right! I got you. That’s a good idea. That’s a family event too.
Rebecca: It’s also portion control.
Rebecca: I can’t go back for seconds because I might get…
Kathy: …glutened. Yeah, that’s actually a good idea. I never thought about that.
Rebecca: Sorry, I have a disability. I have to go first.
Kathy: Right. Right! I know.
Rebecca: I have a disease, so I’m going to be eating first at every event we go to.
Kathy: Right, right. You can stand there and announce it out if you’re having a party.
Rebecca: Well, that girl is eating now.
Kathy: She’s eating first. No cross-contamination.
Rebecca: See, I have no problem doing that. I have a big enough mouth and I’m assertive enough that I would literally be like, “Stop it. No one eats before me.” But there are people that don’t feel comfortable doing that.
Andrew: So do you really do that if you were to go – like say, you came to my family gathering. You would stop and just say, “Hey, everyone. My name is Rebecca Black. I have Celiac Disease. I’m going to eat first.” Literally, do you really do that?
Rebecca: No, I would probably run to the food. I don’t know if I would announce that at your family’s house.
Andrew: Or just anywhere else like a new place? Let’s say you’re going with your husband to one of his friend’s barbecue?
Rebecca: Oh, yeah. If we were at one of my friend’s houses, absolutely.
Andrew: With a new friend that you guys have just barely…?
Rebecca: I wouldn’t maybe be as blunt about it, but I would maybe say something to them in private like, “I just want to let you know that I have an autoimmune disease. Just to protect myself, can you let me know when we’re about to eat because if I get my portions first, I’ll be able to make sure that I’m safe and not risk cross-contamination?”
In that situation, I would just ask them before everyone starts digging in and let them know of my circumstances. But if we were at our friend’s house in Maryland, I would be like, “Don’t let anybody touch this.”
Kathy: Well, if you’re at a family or friend’s house, you’re more comfortable. You can do that. We’re lucky that when we do like a birthday or family thing at my dad’s house, they make sure it’s all gluten-free, but it’s something gluten-free that everybody likes. She actually makes a whole gluten-free meal for everybody, which is kind of cool. She’s accommodated to Kai that way. She’ll make something for everyone. Everything is gluten-free, so everybody have at it. You don’t have to worry about any of the cross-contamination.
Rebecca: Yeah, I mean that would be the best way to do it.
Kathy: Yeah, yeah. I’m lucky that they do. I don’t know if I would do that if there’s so many people. I’d maybe separate it. But she just goes ahead and figures it all out and makes everything gluten-free. That’s always been nice. And she always calls me and then, offering with me whatever goodies – the only thing is maybe not cake or something. Somebody else will bring the cake, but I will bring gluten-free cookies or brownies or something for the desert.
Rebecca: Well, one thing that I have noticed – and just a tip for anybody that’s listening – is be very careful when someone brings something that you think should be gluten-free and you say, “Hey, I could probably eat that, what’s in that” because as you know, if you’ve been gluten-free for a long time, some brands are gluten-free of something and other brands are not.
So if they use – I’m trying to think of a good example here. Here’s a desert example. In case you don’t know this, Reese’s Peanut Butter Cup Shapes like the eggs, the holiday shapes, those are not gluten-free.
Kathy: Oh, they’re not?
Rebecca: No. The only thing that’s gluten-free are the actual, regular-sized Reese Cups.
Kathy: The Peanut Butter Cups. Oh, wow! So what’s the difference? Why is it…
Rebecca: I think they have to use – because they’re cutting the shapes and I’m wondering if they touch it with flour to cut them? I don’t know. I don’t know.
Kathy: Oh, okay. Some kind of cross-contamination going on.
Rebecca: Yeah. And so, they say not to eat the shapes. So if you have someone – I don’t even know, they made holiday shapes and then you can put them in cookies, you don’t know if someone cut those up and put them into – they’ll be like, “Oh, we used these gluten-free cookie thing, Betty Crocker’s that we found. We made peanut butter cookie cups. We were so excited for you. We bought Betty Crocker cookie dough and we made this for you,” well then how do you know what they actually…
Kathy: If the utensils or whatever, what they cut it with didn’t have flour on it from something else, yeah.
Rebecca: Some chocolate chips are even not gluten-free.
Kathy: That’s why.
Andrew: So what do you usually say, Rebecca when someone does make you something like that. I have not yet encountered that. People usually don’t make me food.
Rebecca: Yeah, I haven’t either.
Andrew: But what do you say if someone is like, “Oh hey, Rebecca, I made you this…” or even to you, Kathy. When someone brings something to Kai, what does Kai usually say? Do you guys have something that he says like, “Oh, I feel bad…”
Kathy: No. We’ll just flat out say. That actually happened to me. I was getting my hair done and the gal offered my brownies and I go, “I have Celiac Disease. We can’t eat those.” We just say it. Kai too.
Rebecca: Well, what if they made you something that they thought – you know, they were trying to do a good job.
Kathy: Oh! We just tell them, “You know, we’re so sorry, but…” Every person I’ve ever said that to that he can’t eat it because it could be cross-contaminated, it’s not anything like – I don’t think you’re dirty or anything like that. It has to do with he’s super sensitive and so I would just prefer that he not eat that. And then Kai will just say, “Oh, my mom is not sure what’s in it, so I probably shouldn’t eat it.” So that’s how we handle it.
Kai: The last time I just said, “I don’t want any right now.”
Kathy: Oh, yeah. He’s telling me what he says right now.
Andrew: What did he say?
Kathy: He said, “I would just tell them I don’t want it right now.”
Rebecca: That’s funny. I mean, I would do the same thing. I would just explain that it’s really, really – until there’s actual label regulations on gluten, I’m just so cautious about – you know, I just say I’ve been burned before.
While I know they have every intention of making something for me, I just can’t risk it. I’ve dumped containers out of the garbage at my mother-in-law’s because they’ve been like, “Oh, yeah. This didn’t have anything on it” and then I pull it out and it says ‘modified food with cornstarch’ or maltodextrine, you know those weird ones that always catch you if you don’t know what you’re looking for.
It was like a dip. It was like a salsa corn dip, something. It had something in it. I’m just glad I dumped it out of the garbage. Otherwise, I would’ve…
Kathy: Yeah, because for people that aren’t gluten-free or don’t get sick from it won’t know to look for those little things like that. They don’t know that. They think, “Okay, it says gluten-free” or they’ll just make something that, “This is gluten-free. It doesn’t have…” They think of gluten-free as like…
Kathy: …bread, yeah – not like a sauce or something. I’ve done that. I did it in the beginning. I did it to Kai. I made him beef stroganoff or something. I forgot. It had the gluten-free noodles in it, but the sauce that went in it had gluten in it. I made him sick. Oh, my God! I never felt so bad in my life. It’s stuff like that.
A lot of people do not pay attention to that. I have no problem with saying, “We just don’t want to take the chance” especially someone like you or Kai who get really sick even from just a little bit.
Rebecca: Andrew, we aren’t always as awesome as you to cook for everybody all the time.
Andrew: For me, honestly, I enjoy it and I feel like it’s a great way to send me people. I just like the process of making food that tastes really good in your mouth.
Rebecca: When I’m hungry, I’m ready to eat. I don’t want to smell it cooking. I just want to come downstairs and have it ready. So my husband cooks and does the dishes and I clean our bathroom and do our laundry.
Andrew: That works.
Rebecca: We have an arrangement.
Kathy: That’s fair. That is fair. Well, you know, Brian has become a really good gluten-free chef and I’m not kidding you. He [inaudible 00:44:35] for us and his lunches that he makes every night for work the next day are spectacular. I mean, he has really gotten good at it and creating new things for Kai. He’s really, really good. He’s a better cook than I am. He’s actually really good. And he’s taken some of his grandma’s recipes and converted them to gluten-free. Kai loves to eat what his dad makes.
Andrew: That’s awesome.
Rebecca: Just to change – not to totally change the subject, but I think that an important component in what we’ve been talking about is standing up for yourself and making sure you’re educated and able to ask the right questions. But what about – let me back just a little bit.
For me, I don’t care if you make comments to me because that’s just how I am. I mean, I don’t care. And I realize that there are some adults out there that struggle with this also, but I can only imagine, has Kai struggled with – maybe not his closest friends because they probably understand it the most, but has he struggled with other kids his age?
Kathy: Oh, my gosh! There was an incident not so long ago. It didn’t start out this way, but his food issue was brought into it where some kid tackled him, knocked him down the ground. He had a can of whipped cream and he’s squirting it in his face and said, “Oh, can you eat this? I bet you can’t eat this!” It was horrible.
Rebecca: Oh, my gosh.
Kathy: And that’s never happened to him before. And what the kid did was pretty much making fun of him saying, “Oh, pansy baby…” whatever the words were (some of them, I can’t say). “You can’t eat anything” and it’s just stuff like that.
It was a kid that was mad at him. He got in a fight and he used that to get him upset. He used the food thing because Kai has issues to get him upset.
Rebecca: That’s disgusting.
Kathy: That was the worst thing that have ever happened to him. The other mom (his friend that he was with) called me and I had to go pick him up. He was really upset. He was crying and everything. He had scrapes on his back where the kid knocked him down and bump on the back of his head.
That’s never happened with any of the kids before and I wasn’t sure how to – you know, where they were hurt like that by another kid. And this was just probably like a month ago. It wasn’t that long ago.
Rebecca: Oh, my gosh.
Rebecca: Did you call that kid’s mother.
Kathy: Well, I talked to the dad because he doesn’t have a mom. I talked with the dad. What’s so funny is Kai was friends with him before and had spent the night with him and he said he’s one of those parents that I just talked about that don’t give a crap about the food allergies, “Oh, yeah… yeah… he’s man-ny. He eats that gluten-free crap and he’s on that diet.” He thought it was a fad thing. That’s who the dad was. So I knew what I was dealing with.
I told him what happened and he’s like, “Oh, yeah. Boys will be boys.” And then, after I talked to him after that, I knew it’s not going to do any good to say anything to. So Kai just doesn’t go around him anymore.
That probably was the only thing where someone has given him a hard time about his food. Otherwise, when he goes somewhere, kids don’t like say, “How come you don’t eat this?” They don’t say that to him. They’re really good about it – you know, just acting like it’s a normal thing. “Kai has to eat this and we eat this.”
Some of them are really sweet and say, “Oh, we’ll go here and eat, Kai because I know you can’t have that.” So when they come over like if they want to go scootering or whatever, skateboarding or whatever they do, they’ll say, “Oh, let’s go to Wendy’s or Taco Bell,” or whatever and he’ll say, “Oh well, I can’t go there. But I can go to In & Out” and they’re all, “Okay, we’ll go to In & Out.” They’re really sweet about it. That was the only time he ever had a problem.
Rebecca: Wow! That is unbelievable.
Kathy: That’s the worst thing that’s ever happened. None of the other kids have ever been treated that way. I was – it was horrible. He was devastated. He was just a mean kid. So you have to take…
Rebecca: You’re not finding that that’s the norm?
Kathy: No. No. That’s what I was just going to say. No, that was unusual. I don’t find any of the other – like I said, none of his other friends or other kids, we’ve never had a problem with them not wanting to be around him or saying he’s a hassle because he can’t eat that or whatever kids do. He’s never had that problem. They’re always really good about it and caring to him, caring for him.
And a lot of his friends he’s had since kindergarten, so they’re really good friends. They care about him. They wouldn’t do that. I’m actually surprised there isn’t more.
His transition to gluten-free diet wasn’t as hard as it was for me. I will wander into the kitchen sometimes to Brian and whine, “I’m so mad I can’t eat this anymore. I can’t have those tortilla…” – you know, the fluffy soft tortillas that you used to have all the time. “I can’t have one anymore” and I’d get all upset.
He never did that. So he had an okay transition. For him, that was the only real drama he ever had with a friend. Otherwise, every kid is really supportive – supportive is the word – of him.
Rebecca: Wow! Well, I don’t know what to say.
Kathy: I know, that was a bad one. It was just – argh! The funny thing is we were talking about it on Twitter. You know [inaudible 00:50:43]?
Kathy: Dougie was saying, “That’s assault. You have to call the police” and everything. I said, “Well, I’m not going to go that far,” but it was pretty bad. He was pretty disturbed by it. When he got home, I could tell it was a bad incident because of how he was reacting when he got home. He pretty much just went upstairs. He took a shower and went to bed and didn’t come out until the next morning.
Andrew: Yeah, that’s really bad. I couldn’t imagine – yeah. I couldn’t imagine being a dad and having to deal with that. That’s too much.
Kathy: Yeah. Well, I can’t imagine the dad got caring about your kid acting that way. I’d be more devastated that my kid acted that way.
Rebecca: That’s a bully at its finest right there.
Kathy: Oh, perfect description.
Rebecca: It’s almost like a hate crime for kids with allergies.
Andrew: Yeah, exactly.
Kathy: Yeah! Yes. Oh, my gosh. Exactly.
Rebecca: I mean, that’s just awful. I mean, that’s beyond like calling him a pansy. I mean, trying to get him to eat something that could potentially be poison for him, that’s just…
Kathy: Yes, exactly. And how the hell did he get that whipped cream.
Andrew: That was premeditated. That was definitely premeditated out there.
Kathy: Yes, exactly. That’s exactly what we came right up with. It seems so evil.
Rebecca: I always joke about that…
Andrew: It was planned for the day.
Rebecca: …like you’d better be nice to me or I’ll sneak some pistachios in your food.
Kathy: Yeah! Yeah, exactly.
Rebecca: I was kidding about that.
Kathy: Right! You wouldn’t think it’d actually happen. Where the hell did he get the whipped cream? You’re right, it was probably premeditated.
But he’s good now. He already doesn’t hang around that kid. He bounce back. And he’s so funny. He’s all, “I’m going to go start working out.” His 17-year old brother, “Oh, okay. I’ll help him do weights in the garage.”
Kai was never strong enough to be able to play the sports like football and stuff. His brothers played. His brothers are big and they played football. And Kai is just small. I think having Celiac Disease all that time and not knowing it, I think it stunted his growth and made his puberty not as fast as the other. The other kids, when they were 13 were already big and stuff. Kai still looks small.
Rebecca: Wow! Well, that might be a good place to – I don’t know, end our segment, I guess. I mean, that’s – wow!
Andrew: Yeah, I think we’ll just end it right there. Yeah, we talked about a lot of different stuff.
Rebecca: Yeah. No, that was great. I think it was good.
Rebecca: I think we gave a lot of information.
Kathy: Oh, good. I hope so.
Andrew: Yeah. Yeah, thank you for being with us on this second episode, Kathy. What is it, glutenlibre.com?
Kathy: Glutenlibre.com, yes.
Rebecca: Could you spell that?
Kathy: Yeah, it’s g-l-u-t-e-n-l-i-b-r-e.
Kathy: .com, yeah. And the Twitter and all that, glutenlibremom. Facebook is – everything is glutenlibre, so it’s easy to find.
Andrew: Awesome! Thank you so much for…
Rebecca: Well, thank you so much for your wealth of information and stories. Hopefully, we help people a little bit with all this stuff.
Kathy: Oh, yeah. That’s what it’s all about. I hope so. So thanks for having me.
Andrew: Yeah, thanks. Thank you so much. We’ll see you guys next time.
Kathy: Okay, Andrew. Bye bye. Bye, Rebecca.
Andrew: This has been another episode of the GFMagazine Podcast with Andrew Cordova and Rebecca Black. For more tips and advice on how to make living gluten-free more enjoyable, visit GFMagazine.com. And join the newsletter, it’s free.