Thriving with Celiac: A Deep Dive into Gluten Freedom Nutrition
Kara Wada, MD: Welcome back everyone to this episode of the Becoming Immune Confident podcast. Dr. Kara Wada here, board certified pediatric and adult allergy, immunology, lifestyle medicine physician. And we love having all different conversations related to allergies, autoimmunity and anti inflammatory living with some amazing guests sprinkled in. And today I am just delighted to welcome Alexa Prass. Alexa is a fellow Buckeye. She's a registered dietitian now living in North Carolina, and she combines her over 10 years of personal experience with celiac disease with education to support people with celiac disease and other medically necessary gluten-free diets.
Alexa believes that living a gluten-free life does not have to hold you back, and with the right knowledge and support, you can too, live your best, most authentic gluten-free life. So I'm really excited to dig into the science, the strategy, education, all of this in our conversation.
But first and foremost, I would love to hear a little more about your story, Alexa.
Alexa Prass's personal journey with celiac disease
Alexa Prass, MPH, RDN, LDN: Yeah, thank you. So yeah, I have over 10 years of experience with Celiac Disease. And my story is kind of different as I knew I likely could develop celiac disease before I went gluten-free. So my dad was diagnosed first and he had learned that it's hereditary. And so myself and my siblings were tested at that time.
And at that time when I was tested, I was probably in like elementary school. I tested positive for the gene, but I did not have any internal intestinal damage. So we have both the blood test and the biopsy which the biopsy is like the gold standard for diagnosis. And at the time when I had my endoscopy, there was no damage.
So the recommendation was that I could. I didn't eat gluten until I started having symptoms. And then fast forward to high school, I started having symptoms. I started feeling not well, and I knew why, and I knew how I could fix the problem. Although, at the time, I definitely was not happy about it. I, before then, I was very much "I'll never eat gluten-free, this is terrible."
But I felt so terrible myself that I was like, "I have to do this." And so now over 10 years later, I am here talking about how it really isn't necessarily that bad with, your right support system with your education that yes, it is a burden, yes, it can be frustrating at times and all of these things. The food isn't the same, of course, but that it doesn't have to hold you back and you can still do the things you want. Go to college, go travel, have a family, all the things.
Common symptoms of celiac disease and gluten-related disorders
Kara Wada, MD: So, why don't we start talking a little bit more about the symptoms that people can experience or things that they may, be experiencing, it might prompt them to talk with their healthcare team about the potential for celiac disease.
Alexa Prass, MPH, RDN, LDN: The most commonly known symptoms are usually GI symptoms because the autoimmune response is attacking the small intestines, most of the most well known symptoms are in the GI tract, so diarrhea, constipation, abdominal pain, those types of things, but there's actually over 300 documented symptoms related to celiac disease. Also things like nutrient deficiencies or infertility can be symptoms. People will have neurological symptoms like brain fog or fatigue, migraines. So there are a lot of symptoms, which it makes it even more challenging possibly to get a diagnosis. If you have some of those symptoms that aren't the ones that are more well known, like the GI symptoms.
Kara Wada, MD: I think that has been one of the things that was most surprising to me through my residency education and in particular in the pediatric side of my residency education. We learned this association between celiac disease and then a kiddo who was failing to thrive and failing to thrive is like a clinical situation where a kiddo is falling off the growth curve.
They typically are having lots of malabsorption so they're not absorbing their nutrients, but they're also not absorbing liquid, you know in their gut and that results in a lot of diarrhea symptoms and so I think for me, one of the most surprising things to learn was that it could be constipation, and then also certainly beyond that some of the other neurologic symptoms in particular that you mentioned, why, how frequently is this happening? How prevalent is celiac disease? I
Prevalence of Celiac Disease
Alexa Prass, MPH, RDN, LDN: So the estimate that's widely talked about is about 1 percent of the U. S. population. It's still an estimate and it's hard to fully know because a lot of people it'll take a long time for them to get diagnosed. There's a lot of misdiagnosis I was reading the statistic earlier it's six to ten years for a person with celiac disease to get an accurate diagnosis and there are also a lot of people that will maybe not get an actual diagnosis and then try the gluten-free diet never actually get tested.
And so once you go gluten-free then you're starting to heal your gut and all of these things and then they don't want to do a gluten challenge to do the endoscopy and get an actual, diagnosis.
Kara Wada, MD: Often will meet folks in that predicament where, and this is why I've mentioned a few times on podcasts and emails and sprinkled in different places that if you are thinking about doing a gluten-free diet of any way, shape, or form, before you do it, go talk to your doctor and ask them to order blood work to screen for celiac.
Kind of as you mentioned, the endoscopy or the scope is kind of the gold standard. But we have some pretty good testing that is less invasive, less expensive. That in a perfect world, if you have celiac and you take gluten out, it gets better. The lab work becomes normal. And then you're a bit stuck between this rock and a hard place in not knowing truly what that diagnosis is and then kind of knowing long term what the implications may be. And as you mentioned, kind of that family history of knowing whether or not your family members should be concerned about this too.
Importance of testing family members for celiac disease
Alexa Prass, MPH, RDN, LDN: Yeah, exactly. And I think you know in different situations, it may be more necessary to have, the medical diagnosis because you can you know without going to the doctor, make these changes. But if you have children and want to know if they should get tested or if you're still in school and you need some accommodations there are different reasons why it would be really helpful to, have the actual diagnosis and have a doctor helping you with that.
Kara Wada, MD: So as we think about family members, and you had mentioned that you had undergone screening because of your dad's diagnosis, is that something that's typically recommended or? Folks should think about if they maybe have a parent or a sibling.
Alexa Prass, MPH, RDN, LDN: Yeah, so it is definitely recommended that any first degree relatives, so siblings, parents, children, grandparents get tested because it is highly hereditary and then just to know the one thing that's hard is you can have the gene and it never turn on. But having that information about yourself, " Oh, well this could develop in the future."
And this is how I would go about, living with it and figuring it out and working through that.
Kara Wada, MD: I'm thinking of one colleague in particular that I work with non medical colleague and their whole family, like everyone has celiac and they have the gene and they're like chugging along and in their adult life, doing okay, tend to minimize the amount of gluten they're eating, but knock on wood, the gene hasn't turned on.
Have you come across any information to suggest that there are certain things that may be associated with that gene turning on or turning off?
Alexa Prass, MPH, RDN, LDN: Yeah. So they're still trying to do more research. Obviously it's not like one single thing, but a lot of the conversation is around like stress in the body, trauma, surgeries, childbirth, even and just, overall stress in the body. And there's still a lot more research to be done in that to be able to pinpoint more information about it, but definitely just like overall stress, trauma, all of those kinds of things could possibly be related.
Kara Wada, MD: It goes back to some of the similar things that we consider, or at least I tell patients about when we're talking about things like chronic hives or lupus or other things where you have this predisposition and then sometimes the dominoes fall as they're gonna fall. As you think back to when you noticed those symptoms and ended up with the formal diagnosis. Do you remember what your kind of initial reaction was at the time?
Alexa Prass, MPH, RDN, LDN: Yeah, it was really hard overall. Just making those changes. I was in the midst of starting to apply for college and figuring out what life looked like there. And I didn't have a lot of support from my friends which was unfortunate and hard overall. I had my dad and my sister also was diagnosed so, at home it was really easy, but I remember when I was on the dance team at my school and we would perform on Friday nights at the football games and my group of friends would go to a pizza place afterwards because it was like the one place that was open that late in our town and like I would just sit there and watch my friends eat and so it was definitely really hard transition for me and also just you know figuring out how to do this in my day to day life.
Kara Wada, MD: I think a reminder to me as a mama, too, of helping my kids understand their own and then their friend's differences and doing our best to help people feel included and is so important.
Alexa Prass, MPH, RDN, LDN: Yeah, and although it was hard like I was still able to verbalize like how I physically felt. I can't even imagine had I been a child and like going to a birthday party and not having those things and definitely like you said just like helping other people understand that we all have our different needs and how to include people when they're there and help them feel included and not have those negative feelings
Kara Wada, MD: So, this might be jumping ahead a little bit, I'd be curious if as you look back now 10 years out, Is there any advice you would give younger you back then knowing what you know now?
Alexa Prass, MPH, RDN, LDN: Oh goodness.
Kara Wada, MD: Sorry, that's a little bit of a pageant question
Alexa Prass, MPH, RDN, LDN: I think the biggest thing is to keep the people around you that support you and that want to help you feel your best and be your best. I've definitely let some people I guess shed away from my life and not to say that like they can't be a part of your life but maybe they're not as big of a part of your life if they're not you know, helping and trying to learn how to best support you and care for you. There are people that I'm just like casually friends with, but wouldn't go out to dinner with because they're not going to take the necessary precautions or choose a restaurant that I can participate in.
And so I think the people around you are just really so important in your health journey and just your life journey in general.
Kara Wada, MD: That's so true. Now we think about the nitty gritty of making those lifestyle changes that you mentioned, What all is involved in transitioning from what is typically a gluten filled existence to a gluten-free way of eating?
Tips for reading food labels and finding gluten-free substitutes
Alexa Prass, MPH, RDN, LDN: First and foremost, I think learning how to read food labels. I feel like initially you're probably going to maybe transition to more cooking, just as you're like getting used to figuring out the differences in gluten-free food and just trying to build your confidence and just also advocate, learning to advocate for yourself and ask the right questions.
There are a lot of questions you may ask if you're going out to eat to make sure things are safe for you. But in the initial parts, I think it really comes down to figuring out the kinds of foods you like, the alternatives that'll work for you. And some of them are great, and some of them are not so great, unfortunately, but you just have to find the ones that, that you enjoy and that work for you.
Your family or whoever's living with you. Some of your appliances you may have to get rid of. Unfortunately, there are very few. One of the biggest ones being like a toaster. But like figuring out different things in your kitchen if you need to replace them or not. I think some of the older advice was to like throw out all your pots and pans and get all new ones, but that's really not the case.
Like the toaster or like a waffle iron or something that's just like really challenging to wash completely, those are the things that might need to be replaced. And then also just like talking with your family or whoever you're living with and figure out what's going to work best for you. Like unfortunately, gluten-free food is really expensive.
So like a lot of people if they're In a household and one person doesn't need to eat gluten or that one person is gluten-free and the other can't eat gluten, it may work best for them to have separate meals at times. So just like working with the people you live with to figure out what is going to work for you.
Kara Wada, MD: Are there, when we think about gluten-free, we obviously think about the kitchen first and foremost, but are there other places around the house that we should be kind of conscientious that we may run into issues.
Alexa Prass, MPH, RDN, LDN: Yeah, it's hard to because gluten-free has become so popularized and like, fad diety and Almost a marketing term in some ways, which is, it's good and bad. There are more gluten-free products on the shelf. They're better. It's more available, but then there's also the negative.
Parts of "Oh, well, people just don't really understand for people that really need it". The biggest thing is like gluten has to be ingested. Or eat it and take it into the body for it to have a reaction. So the only thing that are really necessary, anything in or around the lips or the mouth is suggested to be gluten-free but all these other products like shampoos or lotions and stuff really don't need to unless you want to.
At the end of the day, it's your own health, it's your body, you need to make those decisions for yourself, but in the research it doesn't suggest that any of those other products going on to your skin are going to cause reaction and celiac disease.
Kara Wada, MD: So like a lip balm, a toothpaste. More helpful. Your foot cream? Less likely.
Alexa Prass, MPH, RDN, LDN: I mean, unless you're putting your feet in your mouth.
Kara Wada, MD: The only thing I can think of is my almost two year old who like puts everything in his mouth. The toes haven't been, as much lately, but and that, I guess that maybe, goes to say kind of the developmental level of the person too then that might be more important.
Alexa Prass, MPH, RDN, LDN: Yeah, right now, like I live with a roommate who eats gluten, but if I were to one day have children in the house, and like children just touch everything, so like maybe they would eat gluten-free in the house even if they didn't have to and there would be other times and places where they could have gluten exposure.
Kara Wada, MD: Yeah. Yeah, they touch everything that is in their statement. As the viruses and everything come in. I'm curious, sticking a little bit on the subject of food, do you have any you know, like, your absolute favorite substitutes? That you like to share with people, like a favorite pasta or bread or whatever you pick.
Alexa Prass, MPH, RDN, LDN: Oh yeah. I really like the Schar brand. I think they're originally from Italy but they have started having more products here in the States and I really like a lot of their product.
Kara Wada, MD: Awesome. I do not have celiac. I did notice some improvement, at least for some time, with avoiding gluten and was pretty strictly gluten-free for about two years and discovered Aldi has a pasta that I actually really enjoy, and I buy it regularly. It has quinoa and brown rice, so nutritionally it's like a decent source of protein and fiber, and the texture's good, it doesn't have a funky aftertaste, so that's kind of one of my things that has stayed in our routine. And I guess maybe that's a natural segue into kind of the difference between celiac and then folks who, you know, maybe similarly when they're testing is negative, but they proceed in taking gluten out of their diet and do find it to be helpful.
Diagnoses that benefit from Gluten-free diet
Alexa Prass, MPH, RDN, LDN: There are definitely other diagnoses that benefit from the gluten-free diet. One of the ones I can definitely think of is eosinophilic esophagitis. A lot of people have gluten as a trigger and my biggest thing is I don't know what it's like to be in your body. And so if you're telling me that eating gluten-free helps you within I'm really excited for you.
I'm happy it makes you feel better. And there are like a lot of different diagnoses that have been, like, seen improvements with the gluten-free diet. I think celiac disease is just the one I am obviously most passionate about, living with it but I do want to continue building community with other people that also do best or thrive with the gluten-free diet.
I don't want us to be like, "Oh, well, you're gluten-free because of this other diagnosis" We're still in community, we're still learning and helping each other, we're still all kind of going through this together, you know the progression of better gluten-free food or like more education and options and like all of these things.
So I definitely, there are definitely a lot of people that benefit from this diet.
Kara Wada, MD: Yeah. That I will say, so that's one of the conversations I have more, more commonly to in the office and we are overdue for doing an episode on EOE. I was supposed to have a conversation with a colleague some months ago, and we had to last minute cancel, and this is a good reminder that I need to circle back on that, because similar to celiac disease, it is a condition that we're seeing more often.
And it does for a portion of patients will really benefit from, as you mentioned, going gluten-free. And then the other common trigger food is dairy. And so, but, as we think about how, for a lot of us, and I'm going to speak for my generation I'm an elder millennial. For me growing up, like the perfect day of food, and I've shared this before, would have been like a toaster strudel for breakfast, a grilled cheese sandwich for lunch, and then maybe a pasta or pizza for dinner.
It was, and of course a toaster strudel had to have that cream cheese frosting. So it was like refined carbs and cheese all day long. Which it's probably not great from what we now know for our microbiome, maybe delicious from our taste buds and making us feeling like we're, surviving and kind of hitting those pleasure points in our brain, but that's a big switch to make those changes. And what's I think challenging for EOE. And I'd be curious if you've noticed same or differences with celiac personally or with the folks you've worked with, with EOE, symptoms don't always correlate with the dietary change. And so what's really challenging, especially for those folks that their symptoms don't correlate with those changes is there's less kind of that internal like ability to say, "Oh yeah, what I'm doing is making a difference."
Especially if you're having to wait for an endoscopy to say, "Yep, it's looking better or nope, things look the same". So I'm curious kind of what your experience was in that switch to gluten-free, kind of what you noticed about your body and if that's similar to others too.
Alexa Prass, MPH, RDN, LDN: It definitely will take some time to like fully heal. But a lot of people, see or feel, start feeling better within a couple days or weeks. The biggest thing is like when you're first going gluten-free, you're oftentimes going to make mistakes.
Because you've never lived this way before, you've never done this before, you've maybe never had experience with other people doing it before. And so there's a lot of opportunities for mistakes when we're learning anything in life. And so people may not be healing as quickly as they want, or they may be still having reactions and not really understanding why or where the gluten is coming from or, where their exposure was and that's I think the biggest thing but once you figure out those things like, oh, well, actually we were sharing the butter dish and my partner was spreading, using the butter to spread on toast. And then I used it, once you find those things where you're getting those accidental exposures you're gonna heal faster and feel better.
But that does take time and mistakes happen and you have to give yourself grace, getting super hard on yourself about "Oh my gosh I had an accidental exposure. Now I feel bad."
And then also, making yourself feel bad in the mental aspect of that is not going to help, you can learn from your mistake without beating yourself up about it.
Kara Wada, MD: Hmm. Amen. That's so true. And yet so hard because so many of us really, we are taught from a young age perfection is what we should strive for. And rather than understanding that the learning along the way is actually the more important part of the whole. One thing we haven't mentioned specifically, and I think we'd probably be kicking ourselves if we forgot to mention, when you're gluten-free, like what, what do you have to avoid?
Obviously there's wheat, but there are a few other things, too.
Alexa Prass, MPH, RDN, LDN: Yeah, so gluten is a protein and it's found in the grains wheat, barley, and rye. One of the caveats, I guess you could say, would be oats. So oats are a naturally gluten-free grain, but because of growing processes and harvesting and just other processing and getting it from the field to your table, there's a lot of opportunity for cross contact.
And cross contact being just an event where a gluten-free food is exposed to gluten. And so, they are naturally gluten-free, but it is recommended that those foods, that oats be certified gluten-free. If you have celiac disease or need to be gluten-free for any of these medical conditions, just because there is a high risk of that cross contact event.
Kara Wada, MD: And what does it take for something to be certified gluten-free?
Alexa Prass, MPH, RDN, LDN: One thing I like to talk about is not everything you eat has to be certified gluten-free because it's kind of similar to like organic where these certifications can be great, but it also costs the company more, which then in turn oftentimes cost the consumer more and gluten-free food is already super expensive.
But there are third parties that will test foods for companies and give them a certification label. And so to be tested or to be labeled gluten-free in the US, it has to test under 20 parts per million of gluten. It's very hard to understand for most people what 20 parts per million of gluten is, but even a crumb of something that contains gluten is enough to cause someone with celiac to have a reaction.
But this 20 parts per million is in studies suggest that anything under that isn't going to cause reaction in people with celiac disease. So, these companies will work with the third party, get their foods tested, however often, and then they can have that label.
Kara Wada, MD: So, would be, and I mean I liken it to somewhat, there's some similarities and some differences, but as we think about food allergy and some of the labeling issues that make that challenging as well on the same line, in the same facility, there is at least a little bit better process in place, I would say for celiac and for gluten-free, especially in those higher risk things like oats.
Alexa Prass, MPH, RDN, LDN: Well, it is hard too, though, because gluten itself is not one of the top nine allergens. So then you have to understand that maybe it doesn't say wheat, but it has barley. And if you don't look for that because you're just looking at the contains statement you could get messed up.
Kara Wada, MD: Rookie mistake. I say that on me.
Alexa Prass, MPH, RDN, LDN: Yeah, that's okay. It was a great talking point.
Kara Wada, MD: Well, I think what's been frustrating in the food allergy arena is the wishy washiness of some of the language, may contain versus made on a line versus made in the same facility versus, there's a lot of kind of CYA language that's out there that just, it just makes it frustrating.
And when you look at tests of the actual products, what ends up being found in the product, like trace amounts, doesn't always reflect the labeling, which is a real kick in the pants because we like to have certainty. We want to feel like we're doing the things that are safe for ourselves, for our kids.
And yet we also don't want to live completely in fear. And as docs, we want to provide, and dietitians too, we want to provide great evidence based education. There's a lot of gray that falls in with some of that.
Alexa Prass, MPH, RDN, LDN: Yeah, exactly. It really is hard and it takes time to learn, but like you said, things like, "Oh, well, it's made in the same facility", but these food production processes may have 10 different buildings plus, like maybe it's technically the same facility, but it's a whole different building and you never know.
And so it definitely is something that like really needs to be worked on and like getting more clarity for people that do have these food allergies or intolerances so that they, like you said, don't have to live in fear when they're just doing their daily thing. Like we all have to eat, we all have to eat every day.
And we don't want to be afraid of eating because that leads to other problems.
Kara Wada, MD: So, you have put together an incredible resource for people who have celiac disease or are adopting a gluten-free lifestyle. Can you share a little bit more about that?
The Gluten Freedom Nutrition
Alexa Prass, MPH, RDN, LDN: Unfortunately, a lot of people get their diagnosis and they are told to go gluten-free maybe their visit with a provider isn't very long, or the provider just doesn't have enough resources to support them, and then they're just kind of maybe they get a referral to a dietitian, maybe they don't but a lot of people have this experience where they get their diagnosis and then feel overwhelmed and lost and given no direction.
So I've put together a course of 13 different modules to go over the need to know things about celiac disease. What is celiac disease? What is an autoimmune disease? How do you read those labels and like figure out what works for you? Different things like how to advocate for yourself when you go to eat out or go and spend time with family and friends at a holiday.
All of these kind of need to know things that really just will help you feel more confident in living. And being gluten-free in this really gluten filled world. And it's just a way to learn because though there are places on the internet, you can find a lot of this information. There's also a lot of fear mongering and people telling you absolutes, like you can absolutely never eat in a restaurant again.
Well, that's not true. So just kind of giving this information in a way that is evidence based is also, some of it coming from my own experiences and sharing some of those as well. Just so you have a starting off point from when you get your diagnosis to really build your confidence and give you the knowledge you need to really thrive.
Kara Wada, MD: Amazing. Where can people find more information about your course and connect with you?
Alexa Prass, MPH, RDN, LDN: Yeah, so my website is called Gluten Freedom Nutrition and then you can find me on Instagram @glutenfreedomnutrition or my personal, which is more like lifestyle because although I'm very passionate about this, I still also love a lot of other things.
Kara Wada, MD: Amazing.
Alexa Prass, MPH, RDN, LDN: And so that's @alexaprassrdn and those are where you can find me.
Kara Wada, MD: Awesome. Thank you so much, Alexa. I'm so excited we were able to connect. I'm sure we will chat again very soon. And in the meantime, go Buckeyes!
Alexa Prass, MPH, RDN, LDN: Go bucks
Kara Wada, MD: Take care!
Alexa Prass, MPH, RDN, LDN: Bye.
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