Ep 34: Who Else Is Confused About Gluten and Exactly How it Impacts IBD?

Of course, you know what gluten is and what it does to your body. Everyone knows what gluten is.

But what if you don’t?

What if, after all these years of people talking about gluten like they know exactly what it is, you’re feeling confused.

No more being afraid to ask about gluten!

How about a crash course in all things gluten and how it may be impacting your Crohn’s or colitis? How about a simple 3 step framework that makes you a certified gluten free super sleuth everywhere you go—badge and all.

If the whole concept of gluten-free makes you want to pull your hair out, or if you know you should stay away from gluten because you’ve heard it makes your IBD worse, but you don’t know exactly why, or if you just love to nerd out like me on all things gluten related, you’re going to love this episode.

We’re talking about:

  • How long gluten stays in your body after you eat it
  • Your simple 3-step gluten free crash course framework so you know what you can eat and what to stay away from every time you eat
  • When you should to choose “certified” gluten free and when you don’t need it
  • The reason why brown rice might not be as healthy as you’ve been led to believe (especially for those of us with IBD)

And so much more!

After this episode, you’ll have all the information you need to begin your gluten free life. In fact, after this episode you’ll be elevated to gluten free super sleuth status.

Episode at a Glance:

  • [05:36] An imagery experience that really helps you understand gluten and grains
  • [08:34] What gluten and your kid’s craft corner have in common
  • [10:25] The link between leaky gut and gluten
  • [11:40] The reason why it’s so difficult for us to know the difference between gluten sensitivity and IBD
  • [13:01] What happens to your body if you’re gluten sensitive and you keep eating foods that contain gluten?
  • [16:03] How long gluten stays in your body after you eat it
  • [19:01] Your simple 3-step gluten free crash course framework so you know what you can eat and what to stay away from every time you eat
  • [21:45] Becoming a gluten free super sleuth at the grocery store
  • [25:04] When you should to choose “certified” gluten free and when you don’t need it
  • [27:50] The reason why brown rice might not be as healthy as you’ve been led to believe (especially for those of us with IBD)
  • [32:11] The surprising way you can include your family in your gluten free life
  • [37:11] The best way to take your IBD healing journey to the next level.

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Mentioned in This Episode:

Your FREE Gluten Free Cheat Sheet

The Gut Love Community

Additional Resources from the Episode:

Definitions and Facts for Celiac Disease

Hidden Sources of Gluten

Clarifying the Gluten Free Label Rule

54 Foods You Can Eat on a Gluten Free Diet

Is White Rice Healthy?

Why Modern Wheat is Making us Sick

Neurologic and Psychiatric Complications of Celiac Disease and Gluten Sensitivity

Episode Transcript:

Of course, you know what gluten is and what it does to your body. Everyone knows what gluten is. But what if you don’t? What if, after all these years of people talking about gluten like they know exactly what it is… some saying it’s bad for you, others saying don’t believe the hype. If you don’t have Celiac Disease, gluten doesn’t affect you. What if all this time, with everyone around you seemingly knowing exactly what gluten is … what if you’re actually kind of vague on the details behind gluten and you’re unclear on how it affects your body? What if you’re confused about what foods contain gluten and what foods don’t? What if you’re a little leery of asking these questions because it seems like everyone around you knows all about gluten and you don’t want to be the odd woman out.

If the whole concept of gluten-free makes you want to pull your hair out, or if you know you should stay away from gluten because you’ve heard it makes your IBD worse but you don’t know exactly why, or if you just love to nerd out like me on all things gluten related, you’re going to love this episode.


[01:20] INTRO: You are listening to The Cheeky Podcast for Moms with IBD, a safe space for moms with Crohn’s and colitis, connect, explore powerful tools for healing and transform our lives to thrive in motherhood and in life. I’m your host, Karyn Haley, IBD health coach, integrative wellness enthusiast, and mom to three outstanding kids. After having Crohn’s disease for 30 years and working as a health advocate exclusively with IBD clients for the last 10 years, I know it’s time to bring the types of candid conversations I have with my clients out into the open. It’s our time to go on an IBD healing journey and do it like only a mom can. Let’s do this.


Hey there dear one. Today’s episode of The Cheeky Podcast is all about gluten. What is it? Is there really a difference between gluten sensitivity and celiac disease? Why does it matter so much for those of us with IBD that we know what gluten is in what foods contain gluten? If gluten is so bad for you, what kind of problems does it cause? And will all those problems show up in your gut? Can gluten affect other parts of your body? And is there a full proof way to know if something has gluten in it so you don’t get glutened yet again?

We’re going to answer all of these questions and so much more today.

So while back, probably 13 years ago now, I had never heard of gluten. When a little book called Breaking the Vicious Cycle told me I should stay away from eating gluten to help my Crohn’s disease, I had no idea what they were talking about. I had never hear of this word gluten before. But somewhere down the line, while I learned all about how the specific carbohydrate diet can help those of us with IBD, I learned. I learned what gluten is, I learned about it’s impact on IBDer’s especially, and as time passed and more people started to talk about gluten, I forgot that not everyone knows what gluten is.


A few years ago, I was talking to a client during one of her first sessions. I was outlining a possible eating plan for her that was gluten free. I was telling her about all of the grains that contain gluten and talking about how with her new diet, she wouldn’t be eating these grains. I could tell by the look on her face that she was completely confused, and her response told me everything. She said, “Sure Karyn, I can stay away from gluten, but what’s a grain anyway?”

And right then and there, everything changed for me. It was the most wonderful reminder that not everyone knows what gluten is. Many people don’t even truly understand what grains are. How could I ask my client to begin a gluten free diet when she didn’t even understand the grains were.

So, before we even get into how gluten affects the body, before we get into the difference between celiac and non-celiac gluten sensitivity and the symptoms of gluten intolerance, we have to start at the beginning. This is especially for you mama, if you’ve been wondering this very thing. Over the years, I’ve learned that when many of my clients come to see me, in the beginning they are confused about this too. So, once and for all, let’s start at the very beginning and clear up any confusion that’s been standing in your way of your true understanding of what gluten is so you can move forward and decide if gluten is something you want to eat or something you want to avoid.


[05:36] Picture yourself on a warm sunny day, in a tall field where beautiful golden brown stalks are swaying in the breeze all around you. At the top of those stocks is a feather like structure. You are walking through the crops, letting your hands drag against the feathery like tops. Although this top of the crop contains hard pods that are filled with seeds, together, as you glide your fingers over them, they are very soft to touch. If you picked the top of the crop out of the ground and tickled your chin with it, I would almost feel like a light, warm feather.

In these light and feathery tops of these golden brown crops are grains pods, that when ground and processed in a manufacturing plant, these grain pods get made into foods like flour. Yes, the flour that you buy at the grocery store—white or brown—it doesn’t matter, both contain grains. Flours like these can be made from wheat (that’s the flour we’re most familiar with). And grains that got processed into flour are used to make bread, pasta, cookies, cakes, pizza—all those doughy foods we are used to eating in America and other parts of the world. Now, in these grains that make the flour we buy at the grocery store are protein structures. One of the protein structures that’s in many of those golden brown grains like wheat, barley, and rye is called gluten.


So hopefully that imagery exercise helped you see exactly what grains and gluten are. Many people think gluten must be this this nasty, hairy, wart nosed, witch who hides in your favorite foods, but actually gluten is just a protein found in grains.

Like a just mentioned, the most popular grains where you’ll find gluten are wheat, barley, and rye. But gluten is also found in other grains you might see like kamut, spelt, and some oats. So, gluten is not just found in wheat. It’s in many other grains as well.

And gluten has this really interesting property. Think of gluten like the Elmer’s glue your kids use—sticky, elastic, glue. It’s what makes all those baked goods I mentioned before (the bread, cookies, and pasta) chewy, springy, and sticky. Gluten is the glue that binds our baked goods together.

Sounds wonderful so far, right? Why would gluten ever get a bad rap? It’s the star of so many delicious foods.

Well, the problem is that even though on the outside, gluten seems like a harmless, useful protein, on the inside, and especially for those of use with Crohn’s and colitis (so people with already sensitive guts), gluten can start to behave like that nasty, hairy, wart-nosed witch and wreak havoc on not just our digestive system but our whole body as well.

So what exact is so bad about gluten? Why is it a gut disruptor for us?


Well, 50 years ago you might not of had a problem eating foods that contain gluten. But yesterday’s gluten is not the gluten of today. Advances in farming to yield more crops in less time and modernization of crops like growing dwarf wheat, have increased the amount of gluten in grains and made these grains more difficult for our sensitive bellies to digest.

For Crohn’s and colitis bellies, gluten can cause inflammation, an immune system response, and leaky gut that forms when unbroken down gluten particles break through our intestinal wall and begin to travel like foreign invaders into our bloodstream.

This difficulty processing gluten can be so damaging to our intestinal wall, that it actually flattens our intestinal villi, which are these finger-like structures that should stick up tall and proud, protecting our intestinal membrane and helping us with nutrient absorption. When you are sensitive to gluten, these villi can become flat and inflamed. An experience called total villous atrophy and an immune reaction can occur that is so severe that the body attacks the small intestine. This is what is known as Celiac Disease. And you can absolutely have IBD and Celiac Disease. You might be listening to this podcast shouting, me, me!

Symptoms of celiac can be very similar to our Crohn’s and colitis include severe bloating, gas, diarrhea, and abdominal pain.


But, what I tend to see more often with my clients who have IBD is a similar reaction to gluten, but without the diagnosis of celiac. People who experience similar challenges to gluten, without the celiac diagnosis have a true gluten sensitivity known as Non-Celiac Gluten Sensitivity, or a gluten intolerance.

You might have noticed this in yourself. You know that you seem to have a reaction to foods that contain gluten, but you don’t have Celiac. Or maybe you’ve been having the symptoms I mentioned… the bloating, gas, diarrhea, gut pain, but you’re thinking it must be my Crohn’s or my colitis.

This whole gluten sensitivity gets really confusing for those of us with IBD because the symptoms for celiac and IBD are so similar. The bottom line here though is that I don’t want you to let anyone (doctor, friend, internet meme making fun of people who say they’re gluten sensitive) tell you gluten sensitivity isn’t real. For those of us with a sensitivity to gluten, it’s as real as it gets. 18 million Americans have gluten sensitivity compared with 2 million who have been diagnosed with Celiac Disease. So, there’s a lot of us out there. I’m definitely a member of the NCSG club.


And when it’s left untreated, celiac and gluten sensitivity can cause a host of additional problems for us. From inflammation that leaves the digest tract and travels to other parts of the body like the skin (with rashes, bumps, or eczema)… my son had something called dermatitis herpetiformis—a skin condition caused by an intolerance to gluten. His general dermatologist told him he had psoriasis and gave us this foam medication that never worked. After seeking a second opinion and learning it was dermatitis herpetiformis and removing gluten, his skin patches were completely gone within 1 month.

Unchecked celiac and gluten sensitivity can also wreak havoc on the neurological system (with ties to challenges like brain fog, migraines, and ADHD, additional autoimmune disorders, to thyroid disease, heart disease, depression, anxiety, and other mood disorders. So gluten challenges have the power to take over our life. Studies have even linked gluten intolerance to type 1 diabetes, MS, anemia, osteopetrosis, infertility, and epilepsy.

All that chaos from one little protein.


The good news is that whether it’s Celiac or NCSG, the way to solve the problem remains the same, remove gluten.

Easy, right? I know from experience that it isn’t so simple. It takes first, really understanding what gluten is, next knowing where to find gluten (and if you already tried to live a gluten free life you know you have to have a PhD in “glutenology” or gluten “detectivery” to know all the hidden places gluten is found), and then you need a plan in place to make sure you don’t cheat and don’t get glutened unintentionally. Just one ingestion of gluten can stay with you and damage your insides for up to 6 months after eating. Staying consistently gluten free isn’t a joke and it can be tricky to navigate.


So how do you do it? If you want to try a gluten free life, and whether you have IBD or not, I highly recommend you do, just to see if it makes a difference with your symptoms—I’ve seen it have truly amazing results for many clients I work with.  Just make sure you give it a fair shot—30 days to 3 months. No gluten, no cheats, no getting glutened because remember it stays with you, even in small amounts.

What’s 3 months? You can do it!

[18:00] And if you want to do it, let’s get you started and off to the gluten free races! So, we know all about grains and that they can get turned into flour. And we know that many of the foods made with flour today (bread, pasta, cookies, etc) contain gluten and that makes them more difficult to digest. You might be thinking, OK, I’ll just choose gluten free forms of flour and we’ll be good to go. Well, I wish it was that simple, but staying away from gluten isn’t just about staying away from gluten containing flour.

Food manufacturers love to hide gluten in packaged, boxed, and canned food to make our lives more complicated. You really do almost like you need to that PhD in gluten “detectivery” to live a gluten free life.

Are you ready for your crash course? I might not be bestowed with the power to give you a PhD, but I’ve got a gluten free detective badge coming your way with my 3 Simple Steps to Gluten Free Super Sleuth Status.


Step 1 is all about finding the obvious and the not-so-obvious gluten.

I mentioned that food manufacturers like to hide gluten in products. These are foods like salad dressing, soy sauce, marinades, seasoning packets, pre-seasoned meats, and cans of soup. Even non-food items may contain gluten. Toothpaste, make up, shampoo, even some medicines and supplements contain gluten. It’s crazy, but when you really start to look out for gluten, you will be surprised at how many places you find it.

I wish I could tell you that what I just shared with you was an exhaustive list, but I’m really just getting started here.


If you really want to get serious about avoiding gluten (in places where it’s obvious and places where you need your gluten free detective badge), I’ve got a cheat sheet with your name on it. It’s my Obvious and Not So Obvious Gluten Free Cheat Sheet. You can take this cheat sheet with you, put it in your purse, pin it up on your refrigerator—put it wherever you need to, to help you at the grocery store, restaurants, while traveling, and eating at friends’ houses. America is opening, we’re all getting out more, so this gluten free resource will definitely come in handy. If you want my complete gluten free cheat sheet, you can find the link for it in the show notes or go to it directly at karynhaley.com/glutenfree to check it out.

OK, so step 1 of your super sleuth gluten free detective skills is knowing to look for the obvious and not so obvious hidden gluten. Get your gluten free cheat sheet and you’ll be all set knowing what to look for.


Step 2 is developing your super sleuth gluten free detective label reading skills. And it ain’t as easy as it sounds, let me tell you. Food manufacturers aren’t required to say “this contains gluten” on the package—not on the front of the package, not in the nutrition facts, not in the ingredients, not even in the allergens list. But, the FDA does require that if foods contain any of the top allergens, it does need to be list on the allergens list located, on most products, just under the ingredients list. And wheat is a common allergen. Ding ding ding, remember wheat is a big player in the world of gluten. So, when you’re playing super sleuth gluten free detective, the first place to look is the allergen list. If you see the word wheat, you know it contains gluten. Place it back on the shelf. Step away from the product. No one gets hurt.


Now, if the product doesn’t contain wheat in the allergens, that’s great, but it doesn’t mean you’re out of the woods just yet. Since gluten goes by many names, it’s time to search the ingredients for those names. Do you see the words, wheat, barley, or rye? How about brewer’s yeast, bulgur, bran, malt, matzo, or triticale—they all contain gluten.

Remember, there’s lots of hidden gluten out there. This is where your gluten free cheat sheet will come in handy so grab it and take it with you to the grocery store.

I promise you won’t need it forever. It’ll give you a leg up on gluten until you get comfortable identifying hidden gluten in the food you buy.

[24:01] And a couple bonus tips when it comes to step 2: some packaged foods will say “gluten free” on the label. Half these foods are already gluten free and the manufacturer is just using the words “gluten free” to hike up the price of the food. Don’t be fool by false claims. Always be a skeptic when you see “gluten free” on the front of the package. Some foods are naturally gluten free.

One other bonus tip when it comes to step 2: In order for a food to be considered gluten free, it must contain less than 20 ppm of gluten in the food. While that may seem like a very, very low amount of gluten, to many of us super sensitive folks with IBD and also with Celiac, that may not be low enough. I’ve had clients who’ve not been able to tolerate even that amount. If this is the case, choose foods that are labeled “certified gluten free.” This label ensures that it was tested and certified by a 3rd party and that the levels of gluten in the product are even lower than the industry standard—usually anywhere from 5-10 ppm.

Lastly, just because you have read a food label a month ago doesn’t mean you can always trust what’s on the ingredient list to be the same. From time to time, food manufactures change their ingredients, so be on the lookout for changes like that. It’s happened to me several times in all my years of being gluten free where a product I love has changed ingredients and is no longer safe for me to eat.


One last step in my 3 Simple Steps to Gluten Free Super Sleuth Status. You’ve almost got your gluten free detective badge now mama!

Lastly, Step 3 says that instead of having to navigate the world of the super sleuth’s to find the gluten free version of every food, do it the much easier way and just buy food that naturally gluten free—it’s tons healthier and better for your digestive system anyway.

Foods that are naturally gluten free are whole foods. Whole fruit, whole veggies, unmarinated meats and fish, eggs, most diary products (but be careful with ice cream and some cheese products like prepackaged shredded cheese or cheese spreads), whole ancient grains like quinoa, millet, and amaranth). Rice is gluten free, but instead of brown rice, I like white rice better. Many people choose brown because they believe it to be healthier, but actually, but if you’re going to eat rice, I like white basmati rice as a better option. Brown rice contains more phytic acid (which is a natural coating that makes it harder to absorb the minerals in the rice) and also and higher levels of arsenic. Both of these compounds can be challenging for our already compromised gut. White rice, and especially basmati rice, is easier and gentler on our digestive system.

Plain fats and oils, we’re talking butter, coconut oil, ghee, EVOO… are naturally gluten free, many condiments like ketchup, yellow mustard, and mayo are naturally gluten free. You’ll want to always double check the label though, just like I taught you in Step 2 because some condiment companies do tend to add gluten. BBQ sauce, and pasta sauces are a couple places you may encounter gluten.

[29:40] My favorite naturally gluten free condiment is coconut aminos. It’s close to tasting like a soy sauce and it’s delish for salad dressings veggie toppers, Asian dishes. You can find it in the condiments section at your grocery store.

One last thing I want to warn you about as we finish up Step 3. With all of these naturally gluten free foods, and with the packaged gluten free foods, remember that just because a food is gluten free, doesn’t mean it’s healthy.


I hear this from people all the time. Clients, friends, family members.. even though my mom has passed, I can still hear her in my head saying, “But Karyn, it’s gluten free.” I don’t know where gluten free became synonymous with healthy. Yes, for many of us with Celiac and gluten sensitivity, eating gluten free is healthier for us, but cookies are not healthy because they are gluten free. They’re just gluten free.

Crappy food is crappy food, no matter what.

OK my love, we’ve covered a lot of ground today. We started at the very beginning with what’s a grain and what’s gluten. We discovered why gluten and IBD are a bad combination. We explored the difference between Celiac and gluten sensitivity. And finally, I shared my Simple 3 Step Plan to Gluten Free Super Sleuth Status.

You’ve got that coveted badge of gluten free honor now mama. Wear it proudly!

One last thing, we have to talk about before we part for the day. Let’s talk about how when it comes to gluten, you’re going to:


You can think of this as your last bonus tip.

[32:11] If you choose to eat gluten free, feed your family gluten free too. Make your life easier, not harder. The saddest thing for me is listening to a client tell me, I make X for me for dinner, Y for my kids and Z for my hubby. No freakin’ way my dear mom friend. Get real. We don’t have time for that.

Let me make this easy and break it down for you. For breakfast, eggs, most bacon, Applegate Farms sausage, fresh fruit, smoothies… are all naturally gluten free. A treat for the kids might look like a gluten free muffin or pancake.

Lunch might be a protein like chicken, turkey, or fish, eggs or tuna salad… lettuce greens in a salads, whole fruit and veggies, hummus, avocados or guacamole. If you want to keep it traditional and make a sandwich sometimes, gluten free bread is available. Better still, how about grain free bread? Most of my clients like it better anyway. You can easily make your own with almond or coconut flour or you can buy grain free bread from a company called Against the Grain. It makes a great tasting bread, rolls, bagels and pizza too.

Dinner is all about healthy protein and healthy fats. Chicken, turkey, lean beef, or pork, salmon or tilapia. Serve a double vegetable and a small starch as a side. Remember basmati rice, sweet potatoes, and quinoa are all gluten free.


When it comes to your kids, do it like a mom and focus on naturally gluten free foods. They always seem to taste better, and they’re healthier for your kiddos too.

You’ve got this mom friend. I’m with you every step of the way.  Remember if you’ve got Q’s, about the episode, I’m happy to help. If you’re on Facebook, I am too. DM me @TheIBDHealthCoach. Make sure you put the THE in the front when you’re searching. My other account got hacked so this is a new one.  Can’t wait to hear from you.

Until we meet again, I’m wishing you a cheeky and healthy IBD healing journey.

Chat soon!

[36:34] Thank you so much for joining me today and for listening to today’s episode. When it comes to IBD, I know there’s a lot of resources out there, and I’m truly honored that you chose the Cheeky Podcast to get your IBD information today. If you found this information helpful, please give us a rating and review. It helps other moms find the podcast and see what we’re doing over here to help IBD moms everywhere. And if you feel called feel a call to do it, share this podcast with an IBD mom who you know could really use an uplifting message today, ’cause that’s what we’re all about over here at the Cheeky Podcast.

One last thing, if you’re still with me, and if you are, you’re definitely my kind of gal. We have to get to know each other better. If you’re tired of living on the hamster wheel of IBD with all the ups and downs between flares and remission, if you’re struggling to get control of your abdominal pain, gas, bloating, diarrhea and other troubling IBD symptoms, go to my website. It’s karynhaley.com, and my mom had to be just a little bit different, she spelled my name with the Y. So it’s K-A-R-Y-N H-A-L-E-Y.com and schedule your very own free 30-minute IBD root cause trouble-shooting session with me where we discuss the challenges you’ve been having, we set goals to help you move forward, and we talk about how we can work together to help you get your life back. It’s a power packed 30 minutes. You don’t have to live in IBD status quo. There’s so much that can be done to transform your life so you can thrive in motherhood and thrive with IBD. I’ve seen my clients walk this path and it gives me so much joy to take that journey with them.

My entire coaching practice is run online, so you never have to leave your house and you never have to get out of your jammy or yoga pants for us to work together. You know I’m wearing them to. If you’re ready to take your first amazing step towards healing, I’m ready to chat with you. Schedule your free 30-minute IBD root cause trouble shooting sesh today at karynhaley.com. Click on the work with me tab and I’ll see you soon. It’s important to note that the information in this podcast and in this episode is for general information purposes only and not intended to be a substitute for professional medical advice. The statements made in the Cheeky Podcast for moms with IBD, either by me or my guests, is not intended to diagnose, treat, to cure, or prevent any disease. Before implementing any new treatment protocols, do yourself a favor and consult your physician first.

Thank you so much for listening, for being here, for saving this space for us to spend some time together. Until we chat again, I’m wishing you a cheeky and healthy IBD journey.

These statements have not been evaluated by the Food and Drug Administration.
This podcast, video, and blog post is not intended to diagnose, treat, cure, or prevent any disease.

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