Do you worry that your gluten free kids could get glutened at school or at a friend’s home? This is a very real concern shared by many parents (even those beyond the gluten-free space who also deal with food allergies).
Keeping your gluten free kids safe and healthy is your number one priority and as part of increasing awareness about how to advocate for yourself, I want to share this incredibly insightful interview with Tom and Lisa Cimino of GlutenFreeDigest.org who have found a way to keep their young daughter safe while still having a life (after a celiac disease diagnosis)!
How to Keep Your Gluten Free Kids Safe Away From Home
The following points were discussed:
00:28 — Introducing Tom and Lisa Cimino, founders of GlutenFreeDigest.org who are successfully raising their young daughter diagnosed with Celiac Disease.
02:17 – Lisa speaks about how they finally got a celiac diagnosis for their daughter.
05:14 – Standing up to pediatricians to finally get a loved one tested.
10:12 – Steps parents need to take to educate and get everyone on board helping your child remain gluten-free. And finding people who will be advocates for your child in your absence.
13:46 – When and how often to educate the school staff.
15:02 – How to get informed and what is the most effective way to communicate with others what celiac disease is.
19:26 – How to deal with outings and communication with your child’s friends and their families.
23:18 – Educating and getting support from family members.
26:18 – Building your child’s confidence by being the unwavering advocate for your child’s health and well-being.
28:38 – Can counseling help your child “live in a gluten world”?
32:28 – Wrap up and closing remarks.
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Jennifer: Welcome to the Gluten Free School Podcast. I’m your host, Jennifer Fugo and today we are going to talk about how to be an advocate for your child who may have Celiac Disease or they’re very sensitive to gluten.
I have two parents with me. They are dear friends of mine, Lisa and Tom and they are the founders of Gluten Free Digest. They’re going to share with us their experience in advocating for their daughter.
Their oldest daughter, Giulia, was diagnosed with Celiac Disease in January of 2012. After realizing that there was very little awareness of the disease (especially at Giulia’s school), they made a point to get educated, so that they could educate others.
Giulia’s transition into her Celiac lifestyle was difficult at first, but Tom and Lisa’s efforts empowered her teachers and her friends to become advocates for her in school, which helped Giulia to feel confident and be safe.
As I said, Tom and Lisa have started this amazing blog and so I wanted to talk to them. Lisa is actually the director of Provider Relations with Acuity Healthcare at Lourdes Specialty Hospital in Willingboro, New Jersey and Thomas is a career firefighter with the Mount Laurel Fire Department in New Jersey. He’s got over 20 years of experience in the fire service and holds a degree in fire service, science technology and paramedic science.
I really want the both of you to talk about what your experience has been because there’s a lot of parents out there who don’t know how to advocate for your children because your children, especially when they’re young, don’t always have the words or know the words to be able to speak up for themselves.
So let’s start with Lisa. Lisa, could you briefly explain the experience around finally getting your daughter diagnosed with Celiac Disease?
Lisa: Well, I will say it was relief honestly because we were challenged with having a child who was sick for quite a long time. Very non-descript, which I’m sure anybody listening could share some of their experiences with you, but it started with things like constipation. I took her to the doctor. They told us to put her on Miralax. And then it started with canker sores and pains in her legs (which we were attributing to growing pains) and migraines set in.
It was after kind of a fight with a pediatrician that we actually really, really liked who did not want to test her. Tom’s mom had Celiac Disease, so we’re familiar (certainly not to the degree we are now), but we had knowledge and asked for her to be tested and they kind of put us off and said, “No, no, no. We’re going to treat her symptoms.”
At that time, they were focused on her headaches and about I guess about five days into treatment, I went back into the pediatrician’s office and basically told them, “Now is the time. You need to test her. Look at her. Take one look at her and see how sick she is.”
At that point, she had probably lost maybe 10 or 11 lbs. You’ve met her, but she’s a fairly thin child to begin with.
Jennifer: Yes. Yes, she is.
Lisa: She didn’t have a lot to spare. At that point, they agreed with us. We started the testing, the blood work screening first. Giulia’s test results came back off the charts.
She was something like 60 times outside the normal limits for the levels and they recommended we see a specialist at Children’s Hospital of Philadelphia, Dr. Ritu Verma, which we talked about on our blog, but it took us almost two months to get an appointment.
So at that point, we watched her basically continue to dwindle because we were told she had to stay on a gluten-filled diet at that point. It was difficult. It was difficult to watch her be in discomfort and pain. We got through the holidays actually. January 9th was the day she was going in for her scope and she was so ill the night before her scope that day that her gut shut down. She ended up being admitted to the hospital for several days.
But honestly, the day we went in for that biopsy was honestly a relief. We were relieved because we knew that from that point forward, we felt like we were poisoning her essentially.
So from that point forward, we were able to just put her on a gluten-free diet and it was kind of at that point just an uphill swing for us.
Lisa: It was good. It was hard though. It wasn’t instantaneous either.
Jennifer: I’m curious because you mentioned that you had to be very persistent with the doctor. I think that that happens a lot of times especially in the world of IBS that doctors, it’s not – I don’t know, I don’t want to say that they’re intentionally blowing patients off, but how did you just guys get – like what were some of the things you had to do to just be like, “No, this is happening. What we want to happen is happening. You need to test her or else…”
Tom: I think part of it was they didn’t want to commit to it because that was the worst case scenario. So in lieu of immediately going down that road, they wanted to see if they can solve the problem by trying to treat the symptoms.
Once we realized that that’s exactly what they were doing and they weren’t really getting to the crux of the problem, I think at that point, we actually looked at each other and said, “Look, forget it, let’s take her back to the doc and demand it. We have to.”
It was almost like a light bulb went on. I think we were having a conversation with Giulia in the back of the car coming home from school or something like that and you were asking her about her symptoms. It was almost like a light switch went off and you realize, “Oh, my God! These were the exact symptoms of someone that has Celiac Disease.”
We’ve just been – I don’t know if it was because we were listening to the doctors or wanting to follow their suggestions in trying to teach her that we were getting blindfolded to what really was going on. Then all of a sudden, you realize, “This is it! This has been it all along. Why didn’t we just go down this road to begin with.”
So I think when she realized it and now that we have experience with it and we recognize it, I think we say most often is, “Don’t dance around it. Just go right for it and have her tested for it immediately.” If you think that’s the problem, make sure the pediatrician understand it or go to a pediatrician’s office that advocates for that that has experience in dealing with patients or go right to a specialist and just be done with it.
Lisa: And we should tell you, Jen, I don’t know if we told you this before, we had Giulia tested when she was 17 months old.
Jennifer: Did you?
Lisa: Our pediatrician sent to her a GI doctor – not Dr. Verma, somebody different who truly believed she had Celiac at that point. I felt that she had it at that point. She actually got scoped. They told us she was negative, everything was negative and we needed to have her re-tested in five years.
It was interesting that now that we had the knowledge we had and we went through this other physician, we found out that she should have been tested at that point every year.
Jennifer: Every year?
Lisa: Because of the family history and because of the symptoms, she probably had not developed enough antibodies to have a positive test at that point. And so her small bowel biopsy was negative, but you learn so much going through the process and we learned so much now that she probably at that point should have been tested every year. And in fact, her little sister has to be tested every year through puberty is what they have told us.
Jennifer: And this is because Tom’s mother has Celiac Disease?
Lisa: That’s correct.
Lisa: And so does her sister.
Tom: My mom’s sister.
Lisa: So it’s interesting. We’ve learned a lot. Just to wrap up your question about the pediatrician, I will tell you, the one thing they did say to us before I demanded that they send her for testing was that she didn’t have diarrhea and she didn’t have failure to thrive because she was tall and thin. Giulia always showed growth on the growth chart…
Lisa: They were focusing on that as the most common symptoms. Any parent who’s out there who thinks that’s the only thing to look for, it is so wrong.
In fact, Giulia was in a class at Children’s Hospital with a young girl who had no symptoms, physical symptoms at all except she was short. Her pediatrician said, “We should just do some blood work because she’s not growing the way she should grow.”
That little girl who was a year older than Giulia literally had no symptoms and got diagnosed with really not having a lot of difficulty healing. Other than making that change in her diet, she really wasn’t experiencing any negative symptoms related to her disease.
Jennifer: Wow! That’s so fascinating that it shows up on either end of the spectrum. I think that’s an important thing for parents to remember is that you could have a child that something seems off, you can pinpoint it and she could have Celiac Disease. And then you have another child that has all these problems and you struggled for a long time to find a diagnosis.
Lisa: A long time…
Jennifer: Well, I’m curious. So Tom, when you get a diagnosis like this, who do you think you need to start communicating this to in your child’s life? Who should parents talk to first?
Tom: Well, as far as education part, like getting people onboard with the whole process?
Tom: Well, obviously, first and foremost is your family because unless you have a support system in place there or an understanding of it, you’re always going to have problems. If your family doesn’t buy into the whole gluten-free diet, it doesn’t matter what family function you’re at, if they’re not buying into that whole mindset, there’s always a risk for exposure.
Outside of that, from a school setting, I think that’s the next most important thing because that’s where you’re going to have the most opportunity for exposure and really just trying to get the school to understand what Celiac Disease is. And I use Celiac Disease because that’s what we are dealing with. Obviously, there’s other issues with gluten that people may suffer from, but it’s all the same really as far as prevention.
When you have a school setting that understands what nut allergies are and they’re 100% onboard and understand that that is a very big deal and everybody needs to be cautious with that, we found there was not the same fear factor was in place there when it comes to Celiac Disease. I think a lot of that was because they didn’t understand what it was.
So when you said she had Celiac Disease, they would say, “Oh, she can’t eat pretzels?” Well, pretzels is one of the thousand things she can’t have. You just want to make sure in the school setting that you have to make advocates.
That was how we overcame the issues in the school. We found people that could be advocates for her in our absence. The number one person that we found was the school nurse. That was the first person we actually found that actually stepped up and understood what our issues were and was willing to keep an eye out for her.
Ironically enough, that school nurse’s daughter…
Tom: Or niece, I’m sorry… her niece happen to be one, she’s got Celiac Disease and she happens to be a nurse at Children’s Hospital of Philadelphia on the Celiac floor and was Giulia’s nurse one of the days that she was there.
Jennifer: Oh, my gosh!
Tom: We found all these out after the fact when we were talking to the school nurse about it. So there’s a little bit of a whole ‘small world’ thing going on there.
It was great to know that the school nurse one had an understanding of it so she got it. And then she was able to help us get everyone else to get it.
The next thing was every time we talk to – every year, we talk to her teachers. We get the teachers to buy in and to really have an understanding.
The hard found we found (and Lisa and I were talking about this earlier) is that when Giulia was first diagnosed, her confidence level was not very high. Now that she’s experienced this for two years, she has become an advocate for herself so to speak. So she’s not afraid to ask questions anymore. She kind of looks out for herself a little bit. In the beginning, that wasn’t the case. She would be afraid to open her mouth.
So having that set in place in the schools where you can have people there to ask the questions will look out for her, that’s a big help in trying to get her comfortable in lifestyle really when you think about it.
Jennifer: So when you said every year when she goes back to school, she gets a new teacher I would assume because it’s a different grade, do you actually schedule time with that teacher and sit down and explain this to them?
Tom: Yes. And we’ve done that probably on a couple of occasions each year – one during the first part of the school year and then back to school again when we go and visit the classroom and actually have more one on one time. We go and reiterate the importance of making sure that she’s not exposed to gluten.
It’s worked out well because every time they do a project in school that may be a gluten exposure, we’re getting either an email or a phone call from the teacher asking questions about it. What’s safe? What’s not safe? Is there something that you can send in with Giulia for a class project that would be safe for her to use? So it’s working because they’re asking the questions.
And I think with anybody, especially with teachers, they’re taking your child’s care during that whole period of the day, that’s important that they want to make sure they’re safe. From any aspect of safe, they want to make sure the kids are going to be okay.
So they’re going to take their part or make their part in notifying you or ask the questions to make sure they’re going to be safe.
Jennifer: So as far as talking to them, what is the most effective way though? Do you just come out and say, “Look, Giulia has Celiac Disease. Do you understand what that is? Do you know what that means? How do you start that conversation? Because for parents who are just like, “I don’t even know what to do?” what would you suggest? What is the best way to start that conversation? Lisa, you sound like you got some ideas.
Tom: We’re laughing because we…
Lisa: We just talked about this because it is funny. I’m usually the one who schedules the meetings. I am very comfortable talking about it, so I’m right there in the beginning.
I think a couple of things. One is we were very fortunate to get some great information and resources from Children’s Hospital of Philadelphia, which helped us. That information is accessible really to anybody in the country. They can get on their website. They have an amazing Celiac team there and there’s just a tremendous amount of information.
[CLICK HERE TO DOWNLOAD A HELPFUL PAGE TO GIVE TO YOUR CHILD’S SCHOOL!]
We were very fortunate. They actually had a school packet that they shared with us. We immediately had that.
But yes, I do come out and just say, “Do you understand what this means?” and I will tell you, Jen, that they don’t. They really don’t understand it.
And so they’re usually very thankful, but I always give a visual example because I think that that’s helpful to people. And Tom and I were just talking about this and I’m sure you’ve seen it. University of Chicago Celiac Center does this great thing where they show a piece of toast. It’s a visual. I wish the people could see me holding my hands up in this podcast.
So they show a piece of toast and they said, “As little as 50 grams of gluten can make someone with Celiac or gluten intolerance sick” and you scroll down. It’s as little as 50 grams. You scroll down and there’s a crumb. The crumb next to it says, ’50 milligrams of gluten’. And it’s powerful!
Jennifer: Yeah. And I agree with you. Visual images do help people because no one has the sense of – if you were to tell someone, “Well, 10 milligrams is enough,” who the heck knows what a gram looks like. It’s meaningless.
Lisa: So to see a crumb be 50 milligrams, that’s five times the amount that could make someone sick is significant. To me, to have that visual, I tell people that because I want them to have that visual understanding. I think that’s very powerful. I think it’s really helpful.
And then for them to understand the other piece for us speaking specific to Celiac is that this is an autoimmune disease and an exposure for her different than a food allergy is that if she gets exposed, she is at risk for all of these other issues because any time you flair up her immune system, she’s at risk for fibroid problems and at risk for diabetes and other things.
To understand the severity of what that means, that it’s bigger than getting hives – it’s so much bigger than that. And to us…
Lisa: There are people who cheat. There is no cheating for us. For her, she’s 10 years old. It is a lifetime of health for her. We want her to know that she has to always be safe because of all these other problems. And for her, it literally will take her down for three days… three days!
Jennifer: And that’s a long time for a kid and if it keeps happening, it’s no shocker why a child would end up out of school for a very significant period of time.
Lisa: Yes. And that’s a good point you bring up just to talk about the school nurse. Not to backtrack, but it’s important for them to understand because we were lucky that we had a nurse who had personal knowledge. But for them to understand that if your child is coming with these symptoms (and I would imagine that most kids have some sort of a trigger. For Giulia, it’s usually a headache and stomach pains, but whatever their trigger is, whatever it is that you see) to know that it’s okay to call you because in some schools, they don’t want you calling unless your child has a fever.
We empowered her to be able to call us and said, “Look, now we’re her parents and if she’s coming to with these things, you need to know that something probably is not okay.”
And then it was Giulia learning also what that meant and knowing that not every pain was the same too.
Jennifer: I’m curious too because we’ve talked a lot about school. At school, you’re meeting friends and you’re with your friends and she might go out afterwards on the weekends or after school with friends. How did you talk to her friends and parents of friends? What did you do to help with that?
Lisa: We’re really lucky we have – she has great friends, I will say this. She has great friends and friends who have been amazingly supportive, but it has definitely not been easy with that piece.
Lisa: Not long after she got diagnosed, she got invited to a sleepover party and I was in an absolute panic. I mean, I will be honest with you. I actually cried at the mother’s house because she wanted to go because every girl in her class was invited and I didn’t want to not have that opportunity, but I didn’t know how to make it safe for her.
The mother and I had just many conversations. I ended up making all the brownies for the party. I brought five boxes of cereal and I just created things to keep it safe for her and I just created things to keep it safe for her and just try to make it a big deal.
The mother was decided to do ice cream sundaes and just had candy that was safe for her and chose things that would be okay. She says, “What can I do to make it easier?” And actually decided not to serve dinner and started the party later so that she wouldn’t be excluded from the pizza portion of the party.
So I think it’s just not being afraid. One of Giulia’s teacher, actually her teacher from last year said to me, “Stop saying you’re sorry and stop apologizing because there’s nothing to apologize for. You need to just be okay with it. This is keeping her safe.”
That took a little bit of time for me because my nature is to always feel bad for putting anybody out, but we have other friends that have had her for dinner and sleepovers and we send the waffles and they cook them on foils. We just make sure that they know they can’t go in their toaster. They can’t go in the toaster, but she can eat them there. She knows you can’t have butter. You can only have syrup from the container and it has to be okay, but her parents text me, they ask me questions and I’m happy to have the questions. I don’t mind if they’re texting at 11 o’clock at night if it means her being safe at night.
I think that’s it. It’s just not making it a big deal and just you send the food or whatever it is that you have to do to make them feel like every other kid and not be excluded from those moments.
Tom: Just to add to that really quick. I remember when Giulia first got diagnosed (or probably a little bit like maybe six months later) about kids and her friends and how kids amaze you sometimes. I remember one time specifically, one of the big things they do at school, at Giulia’s school is that on Fridays, they will have a pretzel sale.
That used to be Giulia’s favorite thing. That was their snack. She would bring in I think a ¢50 or a dollar donation and then, they would have pretzels for the schools. Well obviously, she can’t have them anymore.
The first or the second pretzel sale they had, her two friends that they weren’t going to buy them anymore because of Giulia. They didn’t want to make her feel left out. And in lieu of having pretzel, they were going to have another snack instead and not make Julia feel left out.
Tom: I thought that was absolutely amazing. I mean, from a 9 year old at that point to make an observation like that and to step up for her. I thought it was absolutely incredible. It just goes to show that kids are smart, observant. A lot of times, we as adults don’t expect to see that kind of an action from them and they really are capable of it. It’s really cool!
Jennifer: Wow! That is a really cool little story. Well, I’m curious too, Tom because you said your mom and your aunt had Celiac Disease.
Jennifer: As far as family is concerned, obviously your family was somewhat versed in this. But I’ve had the experience, we’re family members, we’re very skeptical. They would make nasty comments and say, “Oh, you’re on a fad diet. You’re being picky. It’s all in your head.” Do you have any suggestions about how you can help to get – because I don’t know why, it feels like family sometimes can be the most challenging.
Tom: I agree. I think it’s a health thing. You know what? It’s something that you have to deal with in your life and your family should be able to support you in that.
My mom and my aunt weren’t diagnosed with Celiac Disease until almost 15 years ago…
Lisa: Yeah, it was 13 years for your mom…
Lisa: …and about a year after that for your aunt.
Tom: My mom and my aunt went through life with symptoms. They were diagnosed with irritable bowel. They were diagnosed with gallbladder disease, all the other things.
So for my mom to get finally diagnosed and subsequently since her diagnosis battle intestinal cancer and beat it, I think from that aspect of it, family is exposed to it so they understood how important it was.
But I still know that there’s always going to be an issue. And I think a lot of it really just either is a lack of understanding or lack of education or just really a lack of commitment to it because they don’t want to have it affect their own lifestyle.
I don’t know if we’ve ever experienced a situation where anybody has ever challenged the diagnosis so to speak or even like that. You always have to be aware of your surroundings. And as much as our family has been educated even more so that we’ve done with the website and so on, there’s always that opportunity for exposure. You have to be able to stand up.
And I’ve done it. I’ve probably done it to the extreme where I’ve had to, “Everybody, stop! There’s been an exposure. We got food contamination. We have to pull that away” and we always made Giulia aware of that, “Hey, you can’t have this now because there’s been an exposure and you can’t eat it now.”
So sometimes, I walk away from that situation, we go, “Did I really kind of just blow that out of proportion?” But the other half of me was, “Nah! I didn’t because I don’t want her to get sick.”
So people, in general, I think in our family try to do their best always to try and make sure she’s always going to be safe. You always have that potential for accident or exposure that you just have to watch out for and I think education is the key, man. You’ve got to get people to buy into it just by educating them.
Jennifer: And I was going to say too, by her seeing the both of you care so much that you’re willing to be like, “Stop!” the party comes to a halt, “We need to change everything,” you’re setting an example for her that when she gets older (or maybe she’s at a friend’s house or she goes out to dinner, whatever) and you’re not there that she will do that.
Hopefully, she’ll see that you guys have made that okay. I mean, it’s not to say that you want have disruptive children, but your child has to feel comfortable enough to say, “Wait a minute! I don’t feel safe. I can’t eat this,” maybe either, “I need to go home… I need to call my parents… we need to fix this somehow if they understand well enough.”
It is modeling that they are a priority. They’re taking care of their health. They’re doing what they need to do to support themselves.
Tom: And we’re starting to see that now with Giulia where she’s starting to assert herself in that where she’s at least asking questions or at least asking if it’s safe. That’s important. That’s all I think really part of their confidence and building their confidence.
Let me tell you, having Giulia hurried getting diagnosed was an earth-shattering event for her in a sense that it’s a culture change to go from – we’re a big Italian family, so everything revolves around gluten as far as that is concerned.
So it was a big culture change not only for her, but for us as a family. So for her to have this lifestyle change where she can no longer eat all of her favorite foods was something that she really had to deal with. And internally for her – she internalizes everything to begin with, so it was very difficult for her to transition into that.
Now that she’s a couple of years into this, we’re starting to see her confidence on many levels not just in her ability to advocate for herself, but just on how she carries herself in the world. She’s become much more confidence as a person.
I think maturity is a big thing, but just experience with dealing with it and making it part of your lifestyle and not really making it a big deal so to speak. It is what it is. So you just go along with life. You do the best you can. You just have to advocate for yourself. She’s starting to do that, which is a good thing.
Jennifer: Do you have any thoughts on that, Lisa?
Lisa: I was just going to add just one thing that I think helped us. That is that we had access for a counselor for her…
Tom: Through CHOP.
Jennifer: And was it like a mental health counselor?
Lisa: Yes, through their GI clinic. She’s a doctor of psychology and she only works with kids with GI issues. So she’s on the Celiac team, but other kids with other GI issues. We took advantage of having the opportunity for Giulia to see her.
We did a little bit more frequently in the beginning. Giulia still likes to go see her. And I will say because she’s a private person, but also because – and the way that the physician put it is “she’s had to live in a gluten world”.
I mean, let’s face it. Turn on the TV and it’s McDonald’s. Everything that you see is about food and it’s about things that they can’t eat. It’s convenience foods and they’re surrounded by it. I think that it helped her tremendously to deal with the anxiety.
I mean, we could do it, but we’re her parents. And so to have another person where she could have a private voice – and you know, we don’t really ask her what she talks about. We just let it be her thing, but we have found that it has really helped her.
If people have access to a resource to help their child, I think it really helps Giulia.
Lisa: I just do. I really do.
Jennifer: That’s a great suggestion. I know that I have met a few of these specialists that deal with the counseling end, but they are hard to come by. I remember I met someone several years ago at a gluten-free event in Philadelphia, but I’ve yet been searching for people.
Do you know the name of the doctor or the name of the counselor that she sees?
Lisa: Her name is Dr. Betsy Turner.
Jennifer: Betsy Turner, and she’s at CHOP?
Lisa: She’s at CHOP and she is fabulous! I have since met other people who have children with other problems who have gone to her (not related to Celiac) and have found her to be just amazing.
Giulia really would look forward to going in. What she would do is spend a little bit of time with us, a very brief period of time, openly talk. And then she would have private time with her. It was a really good thing to do for her.
Tom: Especially in the beginning. The whole transition, I can’t emphasize enough…
Lisa: It was hard.
Tom: …it was very hard, very hard for Julia to transition into that. This is a great resource for her, a great outlet to get her mind straight with the whole thing.
It’s hard enough for an adult to wrap their head around the whole concept of – I think it’s harder probably for an adult to change a lifestyle as far as a diet is concerned. But for a kid that’s asking all the why questions, “Why me? Why can’t I do this anymore?” That was a great resource for her to really maybe ask those questions and have somebody answer them that’s probably more trained or better trained to be able to answer those questions.
I think from a parent’s standpoint, when a child asks you those questions, there’s a component there because it’s your kid that you have a response that’s a little more protective than it would be from a professional that may be trained to know how to answer the questions professionally or appropriately and not make it so personal.
We can’t emphasize enough, if you can get that type of access, it’s 100% worth it. You should do it.
Jennifer: Well, I have to say this. I mean I know your whole story and we’ve all – so everybody knows. We’ve known one another in person. We’ve gone to dinner and we’ve eaten at some really nice Italian gluten-free restaurant, which was a total treat, but it’s great to hear your story from this perspective because there’s so much to it.
I think parents, from what I’ve gathered, they’re really afraid. They don’t know how to advocate without – like you said, apologizing all the time or feeling like they’re stepping on people’s toes. I think what you guys have shared is how people can do this without – there’s no instruction manual to do it.
Jennifer: There is none. I’ll definitely post the resource. I’m going to post up some of the resource as we’ve talked about underneath this podcast so that people can access them. Even though they might not be in Philadelphia and have access to CHOP, they can at least maybe download some of these things that CHOP is sharing with people. Hopefully, I will do my best, everybody to find it.
But thank you, guys so much for joining me. I really appreciate it.
Lisa: Thank you, Jen.
Tom: Thanks for the opportunity.
Jennifer: Everybody, please go and stay in touch with Tom and Lisa. You can visit their website, it is glutenfreedigest.org. You can also follow them on Facebook and they’re also on Twitter. They will respond to you. They love to chat. They’re great there. You guys will love Tom and Lisa. You’ve got to get to know them.
Now remember, everybody, please subscribe, rate and review this podcast and then head on over to Gluten Free School and leave your questions and comments on this podcast. We’d really love to hear from you especially if you’ve been struggling with this and you don’t know whom to talk to you to help your child. Tom and Lisa are an excellent resource.
So thank you, guys so much for joining me and I look forward to seeing everybody the next time. Bye bye.
The links referred to in this episode are:
Gluten Free Digest Website — www.glutenfreedigest.org
Children’s Hospital of Philadelphia, Center for Celiac — http://www.chop.edu/service/center-for-celiac-disease/
University of Chicago, Celiac Disease Center — http://www.cureceliacdisease.org/
Follow Tom & Lisa on:
So glad to hear from other parents that have kids with celiac and food allergies. I am blessed to have my son in a children’s day out 4 times a week and the rest of the time cared for by my mom while I’m at work. They really understand the need to watch what my 3 year old eats and ask what substitute I can bring for parties and other activities. They have pizza day every week and he gets his special pepperoni pizza. I try to make it normal, if the class is making cookies, well they also get to make a special gluten free batch with special cookies sheets and mixing bowls. I dread the day he has to go to elementary school. As he gets older he asks if it will hurt his tummy or has gluten in food. I often get crazy looks when I tell someone he can’t have that cracker or pretzel. I’m not apologizing or being difficult. I’m sure others think I’m the wacko Mom that doesn’t want her kids to eat unhealthy, but I have to advocate for him while trying to educate others. I’ll have to check out what counseling is available here in Austin for the future, he may need it. I’ve never considered that, at 3 he’s amazing at accepting his special foods. But I’m sure that it will change when he’s older and more aware that he’s different.
This was so helpful ! Thank you.
This is such a great interview; thank you for sharing. Tom and Lisa are amazing advocates (and so is their daughter!). I have just one pedantic comment: it’s “as little as 50 MILLIGRAMS” of gluten that can cause damage, and a bread crumb contains 50 milligrams, not 50 GRAMS, of gluten. (50 grams, you probably know, is actually a pretty big amount–almost 2 ounces.) I know this must have been a slip of the tongue, but I couldn’t help but point it out anyway!
Thanks Molly, that’s a great point. Was that in the audio or in the transcript that you saw that?
Hi there, this is a great podcast – my twins are newly diagnosed and start school in autumn so I am trying to get my head rounds things quickly so that I can start to educate the school…I’m really interested in the toast diagram but can’t see it in the transcript or find it on the University of Chicago site – can anyone help me in my ineptitude…..please!?!?!
Kirsten, the image is posted in about the middle of the transcript. It’s definitely there, just scroll through slowly and you’ll find it.
Hi – thanks for the reply…all I can see is a white box with a broken camera in the middle…I tried accessing the page on a tablet and a couple of laptops but it’s the same irrespective of the machine I use….is there any chance you could email it to me – please please please?