International Celiac Disease Symposium Wrap Up 2013 Chicago

International Celiac Disease Symposium Wrap Up 2013 Chicago

 

In this episode:

8 Myths debunked

Children’s Celiac Camp

Jennifer Fugo

 

Email Me the Trascription

 

 

Andrew:                Hello, listener. Welcome to the GFMagazine podcast, episode #13. Andrew Cordova here with my co-host Rebecca Black. How are you doing, Rebecca?

 

Rebecca:               I’m great today. How are you?

 

Andrew:                I’m doing very, very good. How is your new home treating you?

 

Rebecca:               Oh, you know… I’m still getting the hang of it. It’s a little lonely. I feel like I’ve been – I haven’t really been on my blog that much because I’m just trying to get the lay of the land and I’m kind of being like a little housewife right now because I’m in the process of trying to figure out what we’re going to do with my business in Ohio. I don’t have a job yet here. Aaron’s very happy. He’s coming home to dinner he’s made at night.

 

Andrew:                That’s good.

 

Rebecca:               I’m getting a little bit better at cooking because I have time to do it. I think that’s the key. In the past, I’ve always talked on our podcast about me like hating to cook…

 

Andrew:                Yeah.

 

Rebecca:               …but I really think that it’s because I didn’t really have the time to do it right. I just was rushing everything.

 

Andrew:                Interesting. So yeah, for anyone that’s listening that doesn’t know Rebecca just moved and yeah, so…

 

Rebecca:               I’m in Virginia now! Woo-hoo!

 

Andrew:                Northern Virginia. How far is that from DC?

 

Rebecca:               About 15 minutes, 20 minutes.

 

Andrew:                Oh, not that far along.

 

Rebecca:               Or if you go at 4 o’clock, it’s about 2 hours. It’s crazy.

 

Andrew:                Wow! Yeah, I remember I was living in Long Beach or Whittier for a while. I was going to school on Long Beach and depending on basically the time, it was either like 15 minutes to get to school or two hours to get back from school.

 

Rebecca:               Aaron rides his bike to work, so we don’t really have to worry about that. And then, right now, I just try to avoid going anywhere between 3 and 6:30 at night and then I’m not a morning person, so I don’t have to worry about morning rush hour.

 

Andrew:                Oh, that’s really cool! How far is Aaron’s work?

 

Rebecca:               It’s a mile and a half, he rides his bike. He loves it.

 

Andrew:                Oh, that’s awesome! That’s… wow!

 

Rebecca:               He likes it. He’s so excited when he gets home because he rode his bike.

 

Andrew:                That’s awesome! So today, we’re going to be talking about – or actually, I want to talk about what you had to eat today because I got – I think we had some feedback I was reading in iTunes, someone left a comment in there saying that they thought it was really good that we share what we eat so they get a picture for themselves of like having examples of what to eat. So I like to continue talking about that. Actually, I’ll talk about what I had to eat today.

 

This morning I had just like some hash that I made last night. It was just like potatoes and flank steak chopped up pretty finely and some seasoning. That’s what I’ve had to eat today at noon. And I’ve had a couple of cups of coffee and probably like two tablespoons of coconut oil today. So that’s what I’ve had to eat.

 

Rebecca:               I have had – let’s see. Last night, we had Shrimp Pad Thai with those brown rice noodles which are my favorite. And then, let’s see, this morning, I had a stomach ache. I just felt yucky this morning, so I didn’t really have much. And then I found this new little organic market called Nourish Market. It’s in Falls Church, Virginia. It has great little – all sorts of little gluten-free stuff. I had a sandwich there, an egg salad sandwich.

 

Andrew:                Nice! I can’t remember the last time I had egg salad sandwich, but I really like egg salad.

 

Rebecca:               I love egg salad. I was that kid that would just sustain on double eggs at parties.

 

Andrew:                Oh, I love deviled  eggs.

 

Rebecca:               I was such a picky eater.

 

Andrew:                I love deviled  eggs.

 

Rebecca:               Absolutely.

 

Andrew:                I used to hate eggs with a passion for the longest time. I used to just think the texture was so gross. And it wasn’t until – I think probably around high school, I started wanting to get into body-building, so that was the most inexpensive and easiest ways for me to sneak protein in, so I bought – I think you’ve talked about this before, you know the egg whites? What is it like [inaudible 00:04:06]?

 

Rebecca:               Yeah, you could buy those.

 

Andrew:                Yeah, I actually buy those frozen and stuff. I used to buy them by – I think it came in 4-packs. Yeah, I used to just drink those all day and just boil eggs and just sneak them during class or any time I could. I just got used to eating eggs. I really, really, really like eggs. So yup, eggs are good.

 

Rebecca:               Eggs are very good. Oh, I did want to talk about one more thing for all the ladies out there – or men I guess, men could put stuff on their face too. My aesthetician that I have had for many, many years has always told me to basically use the most basic things on my face. She’s always said that we start buying things – even the gluten-free beauty products. They have a bunch of chemicals on them and different stuff that you really don’t know how your skin is truly on a cellular level responding to that. And so she had suggested to me like months and months ago that I start using Argent oil. It has made a world of a difference on my face.

 

I pretty much had stopped using any harsh creams or lotions or anything on my face. Now, I will say that I’m very fortunate that I have pretty easy skin. I tend to get one giant zit a month and the rest of my skin is pretty normal, but I will tell you that my skin just feels like moisturized and hydrated. I put it on, just a couple of drops. You don’t want to put it onto your face. It looks greasy and oily. You just take a couple of drops on your cheeks, on your foreheads, on your nose and on your chin and you just rub it in circles really well around your face. I’ve been doing it in the morning and at night and I just can’t stop preaching about it.

 

So for all of you out there, if you’re looking for just basic natural moisturizer for your face, I highly recommend it.

 

Andrew:                That’s kind of weird that you’re talking about that because I was actually – because I just ran out of deodorant and I haven’t been wearing it for the past few days and I was like, “Ah, I need to go get a deodorant” and I usually just buy Degree or whatever. I was thinking, “Ah, maybe I’ll try like a hippie cream or something like that.” So I’m looking online and then I found one for like $8. I’m like, “Eight bucks, that’s not bad.” It’s like twice the price.

 

Rebecca:               Yeah, but how long does a deodorant last? Forever.

 

Andrew:                Oh, yeah. But actually, not for me. I probably apply it like almost twice a day – or I don’t know. Probably in the morning and then in the afternoon because I usually have to take two showers because I play soccer.

 

But anyway, and then I went to checkout and then shipping was like $14.95 and I was like, “Do I really want to spend like almost $30 on…”

 

Rebecca:               Why was it so expensive?

 

Andrew:                I don’t know why the shipping was so expensive. I don’t know. I don’t know. Oh, it was like a craftsman lady that makes them by hand and it’s like made-to-order.

 

Rebecca:               Yeah, but still, it’s shipping. I mean, it’s a bar of deodorant. It should be like $4.

 

Andrew:                Yeah, I think she should just charge more for the deodorant and then just say free shipping. I think I would’ve felt better that way.

 

Rebecca:               Exactly. Right!

 

Andrew:                So yeah, maybe I’ll try it if someone gives it to me or if I find it at a farmer’s market or something like that, but for now I think I’m just going to buy some Degree later.

 

Rebecca:               Yeah. Well, I tried using the – is it Tom’s?

 

Andrew:                I’m confused…

 

Rebecca:               It’s Trader Joe’s I think. I mean, I don’t know, Whole Foods. It just made my armpits feel slimy. I know everybody will be like – there’s a lot of people out there that want to be like natural and stuff like that, but I freaking stink. Really if I don’t have deodorant on, it’s bad.

 

Andrew:                Yeah, I know.

 

Rebecca:               I don’t know, maybe I just have a lot of bacteria on my armpits or whatever, but…

 

Andrew:                I’ve always sweated more than anyone else. Actually right now, my hands are clammy, more clammy than normal probably because I feel I’m starting to feel like I’m getting sick, but my armpits sweat like no other and my back sweats like no other. Immediately, people are like, “Oh, are you okay?” It’s like, “Yeah, I just sweat a lot.” Yeah, I always look like I’m the hardest working person no matter where I am like any physical activity, so maybe that’s a plus.

 

Rebecca:               Yeah.

 

Andrew:                But anyway, for today, we’re going to talk about the Celiac Disease Symposium. I think we talked about you going in previous podcast. The Celiac Disease Symposium, it only happens once every other year I think.

 

Rebecca:               It’s every – well, for a while, it was sporadic and now they’re trying to make it every couple of years. The next one is in Prague.

 

Andrew:                Okay. So do you want to tell our listeners a little bit about it?

 

Rebecca:               Yeah! So I was fortunate I have to attend this International Celiac Disease Symposium where the lead researchers for Celiac Disease and head doctors from all over the world were here to present research and answer questions and give information to people.

 

They had two different tracks. One track was for medical field which focused on treating, diagnosing and testing – you know, way over my head. And then the track that I went to was more for people who had the disease, who have children with the diseases, registered dietitians, other dietitians. The doctors could attend those sessions as well if they wanted to – bloggers, community professionals, doctors assistants, all those things.

 

It was a really great mix of people. I think that they provided a lot of information.

 

One of the things that we suggested – the bloggers, there were a few of us bloggers there, we suggested to them after leaving because it was so informative and it was such a great platform to have this maybe annual event in Chicago and have Chicago host it. Make it like a 1-day event for people to come like the track that we went to and just have what’s the current research, what are the current testing things, Q&A sessions, stuff like that so that people could if they’re in that area or if they wanted to come because the need is so great for that.

 

I really would encourage anyone if you have Celiac disease or you think you have Celiac disease to reach out to the University of Chicago Celiac Disease Center. They really do an amazing job. And Dr. Fasiano is just so – I mean, he’s such an advocate. He’s such a Celiac Disease proponent. You can just tell that he’s really vested his life into this disease. It’s pretty neat.

 

So I also got a lot of good information, which I’ve shared a lot on my blog, but since you’re already listening to our podcast, why not we share some of that with you now?

 

So one of the things that Andrew and I have talked about was making sure that people understand how to get diagnosed. And I know we can’t really have a Q&A with you through this – I mean, we do kind of, right? We do get questions and stuff that we try to answer.

 

But one of the biggest takeaways from one of the sessions that I went to were the 4 out of 5 signs rule for having Celiac Disease. So in order to actually be diagnosed with Celiac disease, you actually should have four of the five of these done.

 

Number one, the presence of sign or symptoms compatible to Celiac disease. So as you know, this could be anything. There’s over 200 symptoms and signs of Celiac disease, so really that could be anybody going to the doctor with signs or symptoms of something.

 

Number two, positive serology test. It’s actually the TTG and the EMA test. I’m not a doctor. I don’t know anything about these. I’m just sharing these information with you. So if you go to the doctor, the TTG and the EMA are the ones you want to ask questions about.

 

There are two genes that you can have – actually, you must have if you have Celiac disease. You cannot have Celiac disease without having these: compatible HLA genes, DQ2 and DQ8+. Now you can also have those genes and not have Celiac disease. There’s 30% of the population that are carrying them as a repressed gene. So just because you have them doesn’t mean that you have Celiac disease. You have the potential to get Celiac disease, you could have Celiac disease, but it’s not necessarily a guarantee if that’s the only test that was run.

 

Positive internal biopsies with damage typical Celiac disease. One of the other things along with that is making sure that the biopsies that are done in your colonoscopy, they take 4-5 samples. Apparently, the average number of samples that doctors take to biopsy are two and they said that’s just not enough. There’s too much of a risk of missing stuff, so 4-5 is actually becoming the best practice and the gold star of diagnosing or getting correct results through biopsy for Celiac disease.

 

And then resolution of symptoms with a strict compliance of a gluten-free diet. This is something that I’ve talked about in my podcast. This is something that I’ve talked about with many people at conferences. If you are truly maintaining a strict gluten-free diet, you watch everything that comes in your mouth, you are really making sure that you’re doing what you need to do to get done, to be safe, there’s very low-risk of cross-contamination that you still have things wrong with you that likely, there’s something else going on besides Celiac disease.

 

So I would encourage you that if you do maintain a strict gluten-free diet, you still have problems, go back to the doctor because further examination might need to be done.

 

And as we all know – I mean, Andrew you’ve talked to so many people about this – is that those autoimmune diseases all play together. I hate to say play, but if you have one, you’re more likely to have another and another and another and a different one and another one. So it’s likely that there might be something else causing some problems with you in your body.

 

Andrew:                Yes, especially the older that you are.

 

Rebecca:               Yeah.

 

Andrew:                And also, I just wanted to chime in really quick. You were talking about if something’s wrong with you, you should probably go back to the doctor. The last time that we spoke – we actually recorded this podcast one time, then I messed it up and I actually muted it. So yeah, anyway, we talked about – I know that just from speaking to people just through my email contact, my Facebook page and so on and so forth, not very many people go back and get follow-ups or even know that – they don’t even know like, “Oh, what should I get followed up for? What do I need to go back for?” Some people just don’t because they’re like, “I feel fine.” But how many people did they talk about, the amount of people that actually do go back for a follow-up.

 

Rebecca:               They do and honestly, I don’t remember the exact amount, but it was something atrocious like 10%. It was so incredibly low. Because Celiac Disease is an internal disease, you can’t effectively manage your molecular levels without having them test it. So really, we have no way of knowing if we’re deficient in different things if we’re not going back and we’re getting tested every year.

 

Now I understand this is very challenging for people who have limited access to health insurance or doctors or anything. Whatever your political beliefs are, hopefully, some people could get help with the new healthcare system that’s coming and that will help people be able to have access to these different things without feeling like they have to spend $2000 just on medical tests. I can’t emphasize enough the importance of going back. Even if you feel perfect, I still feel like a yearly annual doctor’s visit just making sure you’re on track and everything is okay, I think that would benefit us. I think it’s essential when you have a lifelong disease like this. I mean, just because you’re gluten-free doesn’t mean you’re Celiac goes away.

 

Andrew:                Yup. Okay, so there were some other things, kind of common myths that were debunked, were there over there?

 

Rebecca:               Yes, this was a hot topic. They had a whole segment, a 3-hour segment on these myths. The blogger team were tweeting them and Facebooking them and things like that while it was going on. It was something important to emphasize.

 

The first one was, “Can you drink coffee at a gluten-free diet? Is there a protein and coffee that can cross-react with gluten?”

 

The answer is actually yes. You can enjoy your coffee. There were so much coffee at this conference that I’m surprised we weren’t all awake for the three days that we were there. So yes, in fact, it’s fine.

 

Andrew, you and I have talked about this before. Just because you have issues with coffee doesn’t necessarily mean that it’s a cross-reactivity issue. It just could mean that your stomach can’t handle the coffee.

 

Andrew:                Yeah. Well it goes back to if you’re still having issues, you should probably go back to the doctor because coffee is – well, it’s just like a natural diuretic or something like that, isn’t it?

 

Rebecca:               Yeah! I mean, hey! I can tell you that any time that I’ve ever been constipated regardless if I’ve had Celiac disease, someone has always told me, “Have you had some coffee?” I mean, it’s just the caffeine in it. The amount of caffeine in it just triggers your intestines to start moving, so you can’t really…

 

Andrew:                So yeah, coffee is safe to eat or safe to drink.

 

Rebecca:               Yeah.

 

Andrew:                Unless… I mean, we’re not talking about some mixed coffee or anything in a blended, made of blend or anything, just straight coffee.

 

Rebecca:               Right! And I want to preface all of these by saying that these are from medical doctors. There wasn’t anyone that was like Jane from some support group standing up there talking. All of these myths were debunked by actual medical professionals that are experts in these field.

 

Andrew:                Awesome.

 

Rebecca:               Don’t kill the messenger. So can you diagnose Celiac Disease with just a blood test? No. I just talked about what are things you need to have done to have your Celiac Disease diagnosed.

 

If someone diagnoses you based on a blood test, we were all told to find a new doctor.

 

It’s interesting to just pay back on this is that it seems like – have you ever noticed that sometimes doctors get on a diagnosis of the month kick?

 

Andrew:                How so?

 

Rebecca:               Sometimes I feel like the more mainstream something becomes, it seems like the quicker the doctors  are to diagnose you with it?

 

Andrew:                I mean, I can think that, but I don’t really know. I’ve personally not talk to enough doctors. I mean, I could see that. I could think that. Possibly, I mean maybe. It’s kind of like a psychology thing. If you see something in the newspaper  of someone – this is kind of a bad example, but if someone, I don’t know, jumps off a building, statistically, it’s just known that more people are going jump off a building if it’s publicized in a newspaper or wherever.

 

Rebecca:               [inaudible 00:20:22]

 

Andrew:                No, yeah. I would kind of agree on that random thought, but I would never have thought of saying it, but yeah. I do think if something is more publicized, you’d feel more inclined to feel like you think that you have a diagnosis.

 

Rebecca:               Well, I think that’s why it’s so important for people to be educated before they go to the doctor, you know what I mean? So if you go to a doctor and they run a blood test and they’re like, “Oh, you have Celiac Disease,” now that you’ve listened to this podcast, hopefully, you all know that that is not the right answer and that you need to have four to five things done in order for that to really work.

 

Andrew:                Like you said, find a new doctor.

 

Rebecca:               Okay, corn. I think corn is a more controversial topic than coffee is. One of the myths was can you eat corn while living a gluten-free diet? Is corn protein harmful with individuals with Celiac or non-Celiac gluten sensitivity?

 

Dr. Fasiano said enjoy your corn. There’s no proof, no evidence that corn is harmful. But he did say, again, could you have separate issues with corn? Yes. I mean, there are people who can’t have corn.

 

Corn is really hard to digest in general. It’s not an easy food to digest. So even if you don’t have Celiac Disease, corn is hard for some people. And there’s so much sugar in it. If you have issues with sugar and you’re eating a lot of carrots and corn and sweet peas and snack peas, all the more sugary vegetables, it’s going to cause a problem for you. Just because it’s vegetable doesn’t mean it’s not sugar.

 

Andrew:                Yeah, and I don’t think anyone can disagree with the fact that it’s difficult for your body to digest corn, especially whole corn kernels.

 

Rebecca:               I mean, if you were going to the bathroom, it’s hard to digets.

 

Andrew:                And I just think it’s kind of funny that people – actually, when I first when gluten-free, I kind of like second-guessed it. I was just doing my own research, just checking online probably just like you did and I did come across websites that were like, “Oh, don’t eat corn because it’s not gluten-free.” And then they were talking about how the protein of corn is in the same gluten [inaudible 00:22:38]. It has a gluten, but it’s not – and it goes back to the whole thing like “gluten-free”, it shouldn’t even be called gluten-free. It should be called – I forgot what it’s called.

 

Anyways, I was thinking to myself, “Okay, so if all of these gluten-free products have corn in them, how can they be gluten-free.” I’m pretty sure that if a huge company like Pillsbury Doughboy came out with some dough with corn in it, I’m pretty sure you have enough money to do research to find out if corn is gluten-free or not. That’s not a mistake that a billion dollar company is going to make. So yeah, corn is definitely gluten-free.

 

So what’s the next one?

 

Rebecca:               Uhm, sorry, I lost my thought here. How common is non-Celiac gluten sensitivity. This is a fairly new area. The doctors really don’t have any idea. It’s a very new diagnosis and it’s still in the learning phase.

 

The next one, on top of that, to piggyback with that, has there been a genetic / gene link to non-Celiac gluten sensitivity? And the answer is no only for Celiac Disease.

 

Non-Celiac gluten sensitivity is basically where you have all the same symptoms, signs, reactions, you just don’t have the internal damage of Celiac disease. That was my understanding from the conference. They said that some people are calling it Celiac Light.

 

Andrew:                Oh yeah. I remember you said that. It’s kind of a weird name.

 

Rebecca:               Yeah.

 

Andrew:                It almost made me feel like it’s okay to have a little bit of gluten with just Celiac Light, but it’s not true.

 

Rebecca:               Well, I mean, I guess if you’re thinking about it, Celiac Light could be something like lactose intolerance. I mean, I have issues with lactose, but I still eat it sometimes. It’s not damaging me, but it certainly makes me go to the bathroom a lot quicker. So I don’t know, I think that there might be – you know, because there are people who are gluten-free that maybe just do it for –

 

I mean, you had health issues that you have realized that going gluten-free have stopped that, but there were people that just eat gluten-free to eat gluten-free.

 

Andrew:                Yeah, that’s totally true. There’s a ton of different reasons that people eat gluten-free. One of them is just like autoimmune disease. I just got an email from a lady saying, “Did you know that it helps with people that have fibromyalgia.”

 

Rebecca:               I didn’t know that.

 

Andrew:                Yeah.

 

Rebecca:               Okay. This is my favorite one. Are pills like Glutenease or other gluten-enzyme pills found in the health stores and pharmacies okay to take? And the answer is absolutely not… never, ever, ever. There’s no reason to take these enzymes.

 

You and I have talked about this before in our other podcast. They’re totally unjustified. There’s no evidence. Nothing in the market right now helps digest gluten. There are products in the works we were told, but there is nothing effective now.

 

We recorded this last week and so I just want to make sure I say this again. The pioneer product for gluten digestion is not going to be $8 at Walmart. It’s just not. Anything that a company comes up with like this, it’s going to go through the FDA, it’s going to be approved for us and things like that. It’s not going to be found at Walmart the first time. This is going to be something that hopefully doctors will prescribe and that will help with different things. It just blows my mind that something that someone found at the dollar store or Walmart – you know, it’s not a cure for Celiac Disease. It is NOT a pill for Celiac Disease. They are horrible. They’re just horrible.

 

Andrew:                I was saying that – yeah, I was just agreeing with you. I remember the last podcast we recorded. I just remember agreeing with you because I think it’s just – like you said, it’s kind of ridiculous that you would think seriously like a $10 or $20 bottle of pills is going to help you…

 

Rebecca:               Well, here’s the thing…

 

Andrew:                If you really think through that – oh yeah. And like you said, if it’s going to make someone a ton of money that’s going to back up something like this, it’s going to be like a little – I don’t even know who it is because I’ve seen a GlutenEase or something like that Walgreen’s before too. It’s like the generic one. I’m like, “What the hell is this?”

 

Rebecca:               And I’ve met people who have Celiac Disease. They tell me that they help them when they get poisoned or whatever. It’s totally a placebo because you really have no idea what’s happening in your gut.

 

Besides if you have like major symptoms like diarrhea, constipation, whatever it is, but really at a cellular level, we don’t know what’s going on. So you take these, you don’t even know what those pills are doing to you or what’s in them. I mean, what is even in those things?

 

It’s like those fat burning pills. You don’t know what’s in those. Or the metabolism pills. One of them just got pulled off the market because it had kerosene in it and someone died from liver failure.

 

Andrew:                Whoa!

 

Rebecca:               So they’re not regulated. None of those things are gulated.

 

Andrew:                That’s crazy.

 

Rebecca:               So we just need to be careful with those things. Is gluten making you fat? Again, it’s about quality not quantity. Actually they said that people who eat more quality wheat are actually thinner than the rest of us and it’s simply because if you’re eating Ezekiel bread versus Schwebel’s white bread, it has a totally different digestive effect on your body.

 

And so if you do not have Celiac Disease, if you consume gluten and you have no problems with it, that’s not making you fat. It’s the processed food and the choices that we’re making on that side that are causing the problems.

 

And then is the gluten-free diet making me fat? So this is a major issue. It depends on what you’re eating and how much; the same thing. One of the statistics that they said were 40% of people are already overweight at the time of their Celiac diagnosis and then patients tend to gain weight after Celiac diagnosis based on the better absorption of their food. So that’s why they stress the importance of having a healthcare team which includes health and wellness plan, a dietitian, following up with your doctor and sticking with whole foods to make sure that you’re not replacing the junk you were eating before you were diagnosed with gluten-free junk.

 

And as another issue, gluten-free stuff is actually higher in calories, higher in fat and worse for you on a nutritional basis than the other foods are.

 

Andrew:                Because they’re often not enriched too, right?

 

Rebecca:               They’re not enriched, right. There’s no vitamins. There’s no nutrients. There’s nothing enriched in the food, so you’re literally just eating nothing. It’s not benefiting us any way one way or the other.

 

Andrew:                And I just want to say something really quick. I realized that enriched foods or fortified foods, when they fortify them with whatever vitamins, sure those are like probably really not good at all, you could be getting those vitamins from other foods, but when you make a diet change, you know that little amount of vitamins is going to make a big difference especially when you’re doing without them and your body can even absorb nutrients to begin with. So it is really important to find a registered dietitian or someone to help you to find out what your deficiencies are and eat healthy.

 

Rebecca:               Right, right! And I mean, it’s hard. We talked about that a lot in all of our different things that we do because it’s challenging to go gluten-free and to – you know, at little social situations [inaudible 00:31:12] to eat and all the things that are served normal. It’s just hard.

 

Andrew:                Yup.

 

Rebecca:               But we have to just scale it back a notch. I can’t even tell you how many boxes of Annie’s gluten-free macaroni & cheese I ate.

 

Andrew:                How many?

 

Rebecca:               I mean, I can’t even tell you. Literally, that’s what I lived off of for three months.

 

Andrew:                And that’s okay. I think that’s okay.

 

Rebecca:               Yeah. I mean, two years later, I have had eating it.

 

Andrew:                It’s part of [inaudible 00:31:38] You’re not going to eat it for your whole life.

 

Rebecca:               If we were two years later and I still had it every day, then we would have a problem, but…

 

Andrew:                Can you imagine not even having Annie’s mac & cheese, what it feels like back in the day when you had not just…?

 

Rebecca:               You know what though? You probably will be healthier.

 

Andrew:                Oh, yeah, you definitely would.

 

Rebecca:               So you have to eat fruits and vegetables and meat. You have to have all that stuff.

 

Andrew:                Oh, yeah. No, I’m just saying the emotion, more like, I would just think, “Oh, my God! I can’t even eat a cookie or I can’t even have a taste of some horrible bread just like halfway to make me feel normal.”

 

Sometimes, I get on the high horse and I’m like, “Oh, I eat healthy, blah-blah-blah…” but I remember times where I’m just like, “Ah, I could really go for a cookie or a piece of cake or something.” It’s like if I didn’t have these options, that would be horrible.

 

I love to cook. I do like to bake. I’ve been baking more often, but when you’re in a pinch and you just want something or you have a craving, it’s nice to have convenience food.

 

Rebecca:               Right!

 

Andrew:                So that was it for the Celiac Disease Symposium. Anything else about the Celiac Disease Symposium?

 

Rebecca:               I think those are the crucial points, the key points, so…

 

Andrew:                Oh actually, one more. I forgot about that guy. You talked about how there was a guy that had a camp or something like that at the National Children’s Network or something?

 

Rebecca:               Yes. Well, it’s not a camp. It’s just their program. It’s Aaron Rakow at the National Children’s Hospital in Washington DC. They have a great program, a comprehensive treatment approach for pre-teens and teens with Celiac Disease.

 

They really spend time in like a treatment team setting and a support group setting to teach these kids, to empower them to learn about their own disease. They take field trips to the grocery store and practice reading labels, they practice getting products and buying things. They have the older kids, the older teams mentor the younger kids. They help them through support groups and things like that.

 

One of the things he talked about was how important age-appropriate support groups are for kids that are diagnosed with things like Celiac Disease, gluten-intolerance or anything where they have food allergies because it really is key to them. They want to hear and hear stories and support from people their own age. And I know as a parent, you want to be like, “Oh, listen to me, I’m so smart” or whatever, but having them hear it from another 13 year old is much better for them as a 13 year old than trying to have Mom tell them all the time.

 

So that’s just one of the big takeaways was. And he did say that if anyone had any questions, they could reach out to him through the National Children’s Hospital – I think it’s National Children’s Hospital.

 

Andrew:                I’ll have a link in the show notes.

 

Rebecca:               Oh, okay.

 

Andrew:                Yeah, GFMagazine.com/13. And I remember last time we spoke, I was telling Rebecca that I’d like to get them on. I think it’s a really cool thing. It’s kind of like a boys & girls club kind of thing.

 

Rebecca:               Yeah!

 

Andrew:                I’ve volunteered at some kind of stuff like that before and I know that – I think it’s very important. I think it’s beyond important especially when you’re a little bit different than everyone else.

 

Rebecca:               Right!

 

Andrew:                Oh actually, one more thing before we send off. I just wanted to say thank you to Sunny Dave from the United States. She left a 5-star review on iTunes. Thank you very much. She says, “I listen to your podcast over and over. You are both so real and down to earth. Andrew, you rock, but sometimes I would love if you spoke slower especially on Jennifer’s podcast.” Yeah, sometimes I speak really quickly when I get excited, so sorry about that. I will work on speaking slower.

 

And then she said, “I’m learning so much from the podcast and magazine. Thank you both for caring.” And then she asked for Jennifer’s website again. So it’s glutenfreeschool.com and then also glutenfreesugarcleanse.com. I’ll have a link in the show notes.

 

So anything else, Rebecca?

 

Rebecca:               No, that’s it! if you would like to leave a review, we’d really appreciate it or just comment about the episode here. Head on over to ITunes search gluten-free podcast, you’ll find Rebecca and my face there. Click on it. Click on write a review. Leave us five stars and tell us what you like or something.

 

Until next time. I hope you have an awesome day. And thank you so much for listening.

 

Rebecca:               Thanks for listening.

 

Andrew:                We really appreciate it. We will see you later!

 

Rebecca:               Alright, bye!

 

 

  • Diane Buege Buendia

    You mentioned people saying they get glutened from corn & that it’s not true because corn is naturally gluten free. I just wanted to point out that it depends on what form of corn because there are corn chips & pop corn that are harvested &/or processed on equipment shared with wheat & I have definitely gotten glutened in this manner.

    • http://gfmagazine.com/ Andrew Cordova

      You are correct. Cross contamination is possible. Although the point I was making is that some people think corn is not gluten free. But the gluten found in corn not the same as the harmful gluten found in wheat, barely, and rye. On another note, what was the brand of corn chips and pop corn that you got glutened from? I would like to test them for gluten.

      • Diane Buege Buendia

        The popcorn was arrowhead mills organic (the kernels in the bag), I even emailed the company after my son & I got sick & they said the equipment used during harvesting &/or processing was also used for wheat. The chips were Costco’s big bag of organic tortilla chips but in reading labels I see many corn tortilla chips that are made on equipment shared with wheat.