You Had Me At Eat

Episode 59: Celiac Disease Awareness Month Stories

May 04, 2024 You Had Me At Eat Season 2 Episode 59
Episode 59: Celiac Disease Awareness Month Stories
You Had Me At Eat
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You Had Me At Eat
Episode 59: Celiac Disease Awareness Month Stories
May 04, 2024 Season 2 Episode 59
You Had Me At Eat

Something on your mind? Erica & Jules would love to hear from you!

Jules and Erica talk all about May - Celiac Disease Awareness Month and share their own celiac disease diagnosis stories and gluten-free journeys!

Erica’s Canyon Bakehouse Instagram reel 

Bread SRSLY gum-free sourdough pullman loaves 

Cinco de Mayo recipe recap 

Vegan Tres Leches Cake Recipe

Mother’s Day Recipe Round-Up

Mother’s Day gift guide 

Celiac and the Beast book on Amazon

The First Year: Celiac Disease and Living Gluten-Free 

Contact/Follow Jules & Erica

Thanks for listening! Be sure to subscribe!
*some links may be affiliate links; purchasing through these links will not cost you more, but will help to fund the podcast you ❤️

Show Notes Transcript

Something on your mind? Erica & Jules would love to hear from you!

Jules and Erica talk all about May - Celiac Disease Awareness Month and share their own celiac disease diagnosis stories and gluten-free journeys!

Erica’s Canyon Bakehouse Instagram reel 

Bread SRSLY gum-free sourdough pullman loaves 

Cinco de Mayo recipe recap 

Vegan Tres Leches Cake Recipe

Mother’s Day Recipe Round-Up

Mother’s Day gift guide 

Celiac and the Beast book on Amazon

The First Year: Celiac Disease and Living Gluten-Free 

Contact/Follow Jules & Erica

Thanks for listening! Be sure to subscribe!
*some links may be affiliate links; purchasing through these links will not cost you more, but will help to fund the podcast you ❤️

Erica [00:00:13]:
Hey. I'm Erica. 

Jules: And I'm Jules.  Most people have at least one thing that they can't or won't eat. Now we're definitely like that. We started this podcast to talk about the gluten free food industry,

Erica [00:00:25]:
Like new products and some of the stories behind your favorite brands. And living life with especially diet and also some important health care topics. Since we're basically both broken inside. You had me at eat.

Erica [00:00:44]:
Hi, all, and welcome to another episode of you had me you've you've had you've had me at ease. That's not the name of our podcast. Hey, everyone. Welcome to another episode of you had me at eat. That is the name of our podcast. I am Erica.

Jules [00:01:00]:
Still. Still. I'm Jules.

Erica [00:01:03]:

Erica [00:01:05]:
It'll be fine. Everything's fine.

Erica [00:01:07]:
It's fine. Speaking of fine hey. Jules has a broken arm. This one that was not their, last episode. So in case you missed that, Jules has an awesome cast on, which I don't know. Did you get to choose the blue or did they

Jules [00:01:21]:
Of course I did. Okay. Of course I did. Now they get they had a whole range of rainbow colors, and I said, Carolina blue, please. And they pulled this one out. And when it it goes on darker apparently, and I said, if this does not lighten up, I'm gonna come back and you're gonna cut this cast off, and we're gonna try this again because I am not walking out of here with a dark blue cast. It will be Carolina Blue or you're gonna be seeing me again.

Erica [00:01:45]:
Or I'm gonna break my other arm.

Jules [00:01:48]:
Over your head. No. This is actually my 2nd cast. It's very fun. Yeah. Because the first one had to get back and had x rays after a week, and then, they wanted a tighter cast, which I'm not happy about because this is now it hurts more. So

Erica [00:02:08]:
and you you fell while gardening?

Jules [00:02:11]:
Yeah. It's a it's a full contact sport. Kids, don't try that at home.

Erica [00:02:16]:
Don't garden, everyone.

Jules [00:02:17]:
Don't garden. Yeah. I'm pretty bummed about it because 'tis the season to be getting all of those plants in the ground, and, instead, I'm, you know, sitting around watching everybody else do the planting now. Did you did you fall after you were planting, while you were planting? Like, give us a scenario which So I I was getting ready to plant something in a the very large plant, so I had to dig a very big deep hole. And my husband makes fun of me that I can't dig very well because I don't have a lot of weight to put in behind it. And so I, you know, have to jump on the shovel with both feet in order to get the shovel into the hole that I'm digging. And, literally, it was the very first shovel that I stuck in the ground, and I jumped on it. And I used these old shoes.

Jules [00:03:17]:
I love these Keene's shoes that I have that they don't make them like they used to. And these have fallen apart on the bottom, but I use them for gardening. And the bottoms, the rubber sole part, is, like, destroyed, and it the flap of them there should be no flap on the bottom of your soles, but there are flaps on the bottom of mine, and it caught on the shovel. And so I sort of stuck to the shovel as I jumped on it, And I looked like I was on a pogo stick probably, and was not ready for that balancing act. And so I fell backwards like this, you know, and I caught myself like this, on my wrist. But, unfortunately, I was right by a sidewalk when it happened. So I caught myself on a sidewalk. So it wasn't even like I went fell backwards onto the ground.

Jules [00:04:06]:
I fell backwards onto a hard sidewalk. And, so, yeah, that was, that was the very first thing that I did that day, and there was a bunch of stuff that needed to get in the ground. And so I knew I had hurt myself really badly and came inside and took a bunch of Ibuprofen and got a wrist splint that we happen to have because our household seems to break things. And, so I put the splint on my wrist, and I went back out, and I continued to garden for 3 or 4 more hours to get everything that I had at that moment in the ground so that it didn't die. And then I went to the doctor the next day because I wasn't this is a Sunday. There's no way I was gonna get in the ER or whatever. Yeah. So I just went the next day, and they're like, yep.

Jules [00:04:52]:
You broke it. I'm like, that's right. Of course I did.

Erica [00:04:55]:
So how long are you in this thing?

Jules [00:04:58]:
A month at least. Cool. But anything to avoid surgery. So and they said they said if I behave myself, then I won't have to have surgery. But I'm trying, but it's hard.

Erica [00:05:11]:
And that's your left hand?

Jules [00:05:12]:
It is, but I do a lot of my left hand.

Erica [00:05:15]:
Yeah. You're pretty ambidextrous.

Jules [00:05:17]:
I am. I mean, not just, like, all the typing that I have to do, but, like, you know, I was making Pop Tarts today and making gluten free Pop Tarts today. I'm, like, trying to roll them out with the rolling pin, and I'm like, yeah. It's yeah. But you know what? I'm gonna use this time to make a lot of cooking videos, and I'm gonna I'm gonna say, if I can do it with one hand, gosh darn it, you can do it. That's me by my side.

Erica [00:05:45]:
So bad for me. Please buy more of my flour

Jules [00:05:48]:
That's right. You gotta pay these gotta pay these medical bills.

Jules [00:05:55]:
I'm a mess.

Erica [00:05:56]:
So on be on top of this fun, it's also our our craziest month of the year, of May, Celiac disease awareness month. Jules, are you aware of celiac disease?

Jules [00:06:09]:
I'm aware. I am aware. I've been aware. Yes. I feel like I wanna say I was born aware, but I was not. I feel like I was. I've been aware for so long. I've been aware for over 25 years. So, yeah, it's a long time.

Erica [00:06:24]:
It is a long time. I, I love and hate this month because it's a lot of pressure for us as content creators to do a bunch of stuff because everyone else is doing a bunch of stuff when in reality, we advocate for celiac disease 24/7. Yep. And so I love this concept of everyone talking about celiac disease. Thankfully, most things that I've seen already are accurate. Yeah. But it's always like, oh my god. What did you put out about celiac? Like, come on.

Jules [00:06:52]:

Erica [00:06:53]:
Yeah. So it's always kinda like fact checking checking everyone that wants to put a fact out, and I'm like, oh, god. Okay. And then, it for me, it's just, like, all

Erica [00:06:58]:
this content I've said before. Like, there is nothing new that I have to share. Any new research has already been before. Like, there is nothing new that I have to share. Any new research has already been shared. It's not like I'm, like, holding it out for May.

Jules [00:07:09]:
On this podcast, actually.

Erica [00:07:11]:
So, I did do a collab with, Canyon Bakehouse, which is awesome. 

Jules: Yeah. Saw that. My fave brands. 

Erica: And then, I'm gonna be working with, Bread SRSLY as well. They actually launched a gum free Pullman loaf, which is like their giant long loaf of, baked sourdough bread. So I'll actually be getting that in the mail today. And, there's a couple of other people who are, like, saving big announcements for May, which is cool.

Erica [00:07:39]:
Like to see brands do something that's awesome for our community, like more stuff that's actually delicious and made right and made properly. Yeah. But, you know, I don't know. It's kinda like it's just a lot of pressure. Like, I'm mentally exhausted, and it's only the second day.

Jules [00:07:54]:
I know. So I kind of do things in the reverse for celiac awareness month. Like, I kinda wait for everybody to get out of their system, and then they're like, you know, okay, whatever. And then I come in and I start sharing all these, because I I have so many posts on celiac disease, on celiac awareness, on how to live gluten free. I have infographics at the wazoo. Mhmm. And, one of my favorite posts that I have is, make celiac awareness day and celiac awareness month, like, every day and every month, and this is why. And so I share that at the very end of the month, and I try to, like Smart.

Jules [00:08:34]:
Tell people to keep it going. You know? Yeah. We've we've seen all this energy around it this month, but it's not shouldn't just be about this month because every conversation that anyone has about it can raise awareness and potentially help someone to get diagnosed or help someone to find their way to a doctor to find out what the problem is if even if it's not celiac disease. And it can also raise awareness about this the huge issue of people just, you know, toying toying with the diet and then not getting tested, and then it's too late. And so, you know, all of that stuff needs to be an every day, every month kinda thing. And so a lot of the stuff that I'm intending to share will come later in the month as people are kind of like, okay. I'm all shared out. I don't have anything else to say.

Jules [00:09:25]:
I'll be like, oh, but wait. There's more.

Erica [00:09:27]:
Yeah. And I always have, like, a lot of just, like, really want more stories. It's like, hey, look at how far we've come. You think it's so great? Well, this is still happening. We still have to advocate. And, like, nobody wants to see that the 1st of the month, they're like, this is depressing. Like, yeah,

Jules [00:09:44]:
sure. Yeah.

Erica [00:09:47]:
Every day. Okay. Yeah. No. So it's it's, again, a love and hate relationship with May. It's also food allergy awareness month, which is great. You know, we've had the chance to work with, like, kids with food allergies, and your product is so good for kids who are diagnosed and they're trying to, like, have some sense of normalcy in their life, you know, that are free from, like, you can make things without dairy, you can make things without eggs, It's peanut free. Your menu trinfo certified from the top allergens.

Erica [00:10:17]:
It's that it's EOE awareness month. It's International Celiac Disease Day. There are so many things. I'm I'm losing it, ma'am.

Jules [00:10:25]:
Oh, and by the way, this weekend is Cinco de Mayo, and next weekend is Mother's Day. So they're big food holidays too. So I'm in the middle of trying to share a ton of recipes for people so that they don't feel left out and they don't feel like they're, you know Yeah. They can't make things or enjoy the food holidays that they are. You know, which is also part of celiac awareness and part of, you know, food allergy awareness and all that stuff too. So I'm going to a baby shower

Erica [00:10:54]:
at a Mexican food restaurant on Cinco de Mayo, and I just got an email from them saying that they're going to have Mariachi bands. And I'm like, what a perfect time for a baby shower. I'm like, maybe there's no actual, like, human baby on the outside of a womb that can be, like, crying at

Jules [00:11:10]:
the mirror. Yeah. She's been

Erica [00:11:12]:
drinking margaritas. Yeah. So, yeah, so that'd be super fun. And then Mother's Day, I mean, hadn't even thought about

Jules [00:11:20]:
it. Yeah.

Erica [00:11:21]:
Of course, I haven't.

Jules [00:11:23]:
Right. Well okay. So let me just put this out there because I've been working my tushy app on all these things. But, I have a Cinco de Mayo recipe roundup with 18 recipes in it and, gluten free, dairy free, a lot of them vegan. I even have a vegan tres leches cake recipe, which is yeah. Someone challenged me to make that many, many years ago. It was a a reader who needed a vegan tres leches cake to make her life complete. So, of course, I'm like Yeah.

Jules [00:11:56]:
I can do that. Sure. I'll do that for you. And it's been a really popular recipe. But then also for mother's day, I have a a huge recipe roundup. I think there's, like, 35 or 40 recipes in that, and I'll probably add some more between now and Mother's Day. But I also just finished my mother's day gift guide, which was also a huge labor of love. And that was, largely put together after, the home show this year, which we still haven't even gotten to on this podcast.

Jules [00:12:26]:

Erica [00:12:27]:
still haven't heard from you what happened at the home show. I'm waiting for that episode of the podcast to come on, apparently, because we can't talk outside of being recorded, apparently.

Jules [00:12:38]:
I don't know if

Erica [00:12:39]:
you know this, everyone. I started a new job and, between that and my cats literally just, like, heating themselves into unwellness, into, like, fighting for survival on a daily basis, It's

Jules [00:12:53]:
been, like, mentally challenging for me lately.

Erica [00:12:56]:
So, Jules and I have been struggling to really get together, and, you know, I don't know if you also saw her arm. So it's been a real joy Yes. Around here lately. So, yeah, it's been it's been challenging to really just even chat and just be like, hey, Jules, what's up? It's basically just like, this is another record today. My cat has yeeted himself off a building or whatever. I need

Jules [00:13:23]:
to go to the vet. I know. Well, anyway, there's a lot. There's a lot. So I can't wait to read your mother's day guide

Erica [00:13:30]:
and see all the things that you found.

Jules [00:13:33]:
Yeah. Well, between the mother's day guide and the upcoming father's day guide, you're gonna see a lot of the stuff that I found at the house.

Erica [00:13:39]:
I don't know how you have the time for this because I don't have

Jules [00:13:41]:
time for anything. And and I had to do it all, like, one handed. You should've seen me in that photo shoot too. I'm like, trying to put it all together. That was a lot of fun.

Erica [00:13:49]:
I can't wait.

Jules [00:13:58]:

Erica [00:13:59]:
Okay. So let's dive into May for celiac awareness month. Yeah. I just wanted to do something nice for every one of you, a gift, which is us telling our short celiac disease story because I feel like maybe we haven't done that. So we talked about how weird we are and how we don't eat things, and you know about, like, I guess, my bathroom habits. Those are the things we've talked about in the show, but I don't know if we told our celiac diagnosis story.

Jules [00:14:24]:
Well, go ahead. Lay it

Erica [00:14:26]:
on. Yeah. No. I mean, so I, who knows if I have celiac? It's just a joke at this point. No. So I was diagnosed and undiagnosed and rediagnosed a couple times by a couple different doctors. Basically, I was having issues where I got sick one night and never never really got better. And I was having issues with, digestion, And, I had, like, really, really bad GERD, and I couldn't seem to digest much of anything.

Erica [00:14:54]:
And, I was, like, nauseous, and I didn't know what was going on. And it had happened right after I had an episode of food poisoning pretty badly. So I went to the GI, and he's like, I don't know. Sounds like a couple things, maybe GERD, maybe whatever. And I had been tested on and off for celiac, but not while being, like, while being on a gluten free diet because she's, like, oh, just try it out and see if you feel any better.

Jules [00:15:22]:
Love that.

Erica [00:15:23]:
So I had one of those doctors. And so then I was tested without with being on a gluten free diet. And then I had another doctor who was a GI who wasn't just like my general doctor. And the GI was like, let's test again, but I wasn't, again, was not eating gluten to be enough to be, scoped. And then, he's like, well, it clearly isn't celiac because your numbers aren't off the chart for your blood test. And, honestly, my numbers were never off the chart for the blood test of any blood testing that they did. And, so he thought it was something called gastroparesis, which is like a slowing of the digestive tract, which made total sense. And actually it was, and it got so bad and we tried so many different things and so many medications.

Erica [00:16:10]:
And then, it was just weird because I tried all these medications, and some of them work. Some of them are really weird. Like, one of them made me, like, almost fall asleep while I was driving. And, one of them helpful. Yeah. One of them gave me, like, side effects where, like, you would just have, like, weird movements, like tardive dyskinesia kind of thing that you see all the commercials for. Anyway, and then I went in one day. I'm like, this is bad.

Erica [00:16:35]:
And he's like, well, only other thing is getting a stomach pacemaker. And I'm like, no. So, then I went to Mayo Clinic. Thankfully, I got in, and she's like, yeah. No. We're gonna actually, like, do the real test for you, so you have to go back eating gluten for, like, 4 to 6 weeks. Do, like, the the standard of, like, actually actually eat a bunch of gluten, not just, like, have a cracker with your meal. So he did that, and then, she's like, yeah.

Erica [00:17:02]:
No. Do you have celiac disease? So then when I removed all gluten from the diet and actually, like, did the gluten free diet the way that I was supposed to be doing instead of eating quaker oats every day, like, with regular oats, my gastroparesis went away and, like, things were magically better.

Jules [00:17:18]:
So Oh, lovely.

Erica [00:17:19]:
Yeah. She, after she challenged me with all the gluten, she had the things like the abscess ulcers, and my my fingers were, like, super, super arthritic, which is actually one of the things that happen when I get gluten. And, just the standard, like, anemia, all the things that are extra intestinal manifestations of celiac disease. Mhmm. That's what I had, But I didn't have any of the intestinal ones. Like, I barely had, degradation of the intestines, intestinal villi, like, barely. You know, some people go in and they're, like, marsh zero, and they have, like, flat intestines, and they're absorbing nothing. I wasn't absorbing things because I was, you know, anemic.

Erica [00:18:03]:
I had osteoporosis at 25, like the beginnings of osteoporosis in my hips at 25. You know? That's not good. I wasn't just absorbing anything, but my villi were somewhat intact. Like, I definitely had increased intraepithelial lymphocytes, which are like the things that happen before your villi start to degrade. But who knows? I mean, it could have been really bad when I was younger, and it got who knows? So, anyway, yes, I have celiac, but it took a long time to get diagnosed because I always thought it was something else because I had never really been diagnosed the proper way, which is, I guess, what I'm saying.

Jules [00:18:37]:
Years was it between the time when you started manifesting symptoms and the time when you actually got your proper diagnosis?

Erica [00:18:45]:
I mean, I always manifested symptoms. Like, I look back and I'm like, oh, I was I had always had massive apthus ulcers in my mouth. Always had dental enamel issues. I had always had all those like, I was so I was so underweight too. Like, it just I had all those things.

Jules [00:19:04]:

Erica [00:19:04]:
And so I'm like, oh, yeah. I guess it just took, like, one time where, like, you know, the gastroparesis or the die delayed digestive, emptying caused by celiac or whatever Right. Like, was really what took me over the edge. Right. So who knows? But, yeah, it was between, like, 2,009 and 2 1011 that I was, like, going back and forth to all these doctors being, like, what's going on? But 2011 was, like, oh, yeah. Okay. Mayo Clinic. Like, we gotcha.

Erica [00:19:30]:
Like, okay. Thank you for standards.

Jules [00:19:32]:
Then you wrote a book.

Erica [00:19:34]:
And then I wrote a book in 2013.

Jules [00:19:37]:

Erica [00:19:37]:
Because I was like, I don't want anyone else to deal with this.

Jules [00:19:40]:
Yeah. Also, like, I had gone to

Erica [00:19:41]:
a naturopath, and she's like, tank these, take these, what is that when it's all fake? Like, what a natural pastel that's all bullshit?

Jules [00:19:53]:
Oh, lots. Oh, homeopathic.

Erica [00:19:56]:
Oh. Homeopathic? Homeopathy? Yeah. Yeah. So, I had a I had a a naturopath that was selling me on homeopathy and, like, doing all these weird things, and I was doing, like, castor oil packs. And I was doing all these things that are, like, naturopath, whatever, and I was shelling out so much fucking money. And then I went to Mayo Clinic, and they're like, what are you doing? And I'm like, yeah. This. And they're like, no.

Erica [00:20:21]:
Why? And she's like, do you feel better doing that? I'm like, I don't really know. And she's like, but you keep paying them. And I'm like, oh. So then I realized, that there's so many predatory people out there that are like, oh, you don't feel well. Let me take your money and then try to give you things that don't actually work. So that's part of why I'm, like, so mad all

Jules [00:20:42]:
the time. We've gotten to the bottom of this. This has been a great therapy session, and I'm really agree. Glad to be a part of it. This is why I'm mad all the time. Yeah. Homeopathy? Yeah. So incredible.

Jules [00:20:58]:
There there's I mean, there are a lot of supplements and a lot of really great things that can come from them. But, yeah, there there are some people who are predatory, and there's a lot of, you know, stuff out there that's actually not helpful. Mhmm. So my celiac story, I will, just briefly share was, kinda like what you described. Like, you just sort of after your, I guess you said food poisoning, like, you really felt really sick after that and didn't get well. I was I always had, like, an iron stomach and was always just totally fine as far as I knew. And then I was in college and vegetarian. My diet consisted of bagels, pasta, pizza, and beer primarily.

Jules [00:21:47]:
That was pretty much what my college diet was. And, they one day, I literally remember, like, feeling sick. And I had had shrimp scampi the night before, and it had a lot of garlic in it. And I was like, oh, man. Like, the garlic is really staying with me. Like, I can't can't escape that garlic. And I felt so sick, and, it was like I had the flu or something, and I never got better. And I had I was at University of North Carolina at Chapel Hill, a wonderful medical institution.

Jules [00:22:24]:
And so I eventually wound my way from student health up the food chain to, you know, seeing people there in all kinds of places, and I became part of a study there, And they couldn't figure out what's wrong with me. I had, like, every poke and prod and test that was done, and we've talked about this before where you're on the table and they shake you and you drink barium out. I had everything done. And they they did another test where it was, part of the psych department. That was, the psych department and the gastro department had come together for a test of IBS. Because they basically said, we don't know what's wrong with you. You have IBS, like, the normal story. Diagnosis or exclusion.

Jules [00:23:02]:

Erica [00:23:02]:
Exactly. We can't put you into something and so fall into this bucket, which

Jules [00:23:06]:

Erica [00:23:06]:
You know now, IBS is not a diagnosis of exclusion.

Jules [00:23:09]:
Yeah. It's a black men.

Erica [00:23:11]:
Yeah. We're just like, sure. Why not? You're a woman. You're either hysterical or you've got IBS. So there

Jules [00:23:17]:
you go. So that was my initial diagnosis. And, they're like, you know, I was part of that study. I don't know if I had the placebo or not. Nothing worked. So, then I went to, grad school at Duke University, and I saw the gastro department there. And the consensus that at their their department was that I needed to eat more fiber, and they suggested that I eat, mini wheats. And so I would sit in my, classes, and I would eat bags of dry frosted mini wheats during class.

Jules [00:23:55]:

Erica [00:23:55]:
so I'm not gonna lie. I also really love frosted mini wheats.

Jules [00:23:59]:
Well, the frosted side, of course, was really good. The rest of it was gunk. But, yeah. So I just sat there poisoning myself every day, thanks to, you know, doctor's orders and miraculously never got better. And then and I and I kept I had to go see other types of doctors then because things were escalating. So I I got iron deficiency anemia. I had all sorts of, GYN problems. I, kept getting sick.

Jules [00:24:26]:
Like, one after the other, I would just have a sinus infection, go on antibiotics. Like, I'd be off of the antibiotics for a week, I get another sinus infection. So, like, just repeated all kinds of different, sicknesses, and and I had all the GI symptoms. So like I said, like, I got sick one day, never got well. And by the way, I still, to this day, cannot eat garlic. But that's another story. So then after that, I

Erica [00:24:49]:
shrimp scampi.

Jules [00:24:51]:
Oh, I haven't eaten that since. But so then I went to University of Florida. I did a stint down there, and I also saw the gastroenterologist, associated with the university down there. They also didn't know what was wrong with me. And then I went and did I worked in Georgetown. I worked in the Georgetown area, and I went to Georgetown University to see doctors there. They also didn't know what was wrong with me. And so then I went to I took a job in rural West Virginia, under the Violence Against Women Act grant.

Jules [00:25:26]:
They send you to rural places, and, I was prosecuting domestic violence. So I was out in the middle of the boonies and I was, I I it was hard already because I was vegetarian, and there wasn't a lot to eat in, like, meat and potatoes country. And then I finally, you know, found a gastroenterologist, and I was like, hey. I've seen everybody under the sun. You're not gonna tell me anything out here that I don't already know, but, can you just give me a prescription for, an antispasmodic? Because that's pretty much the only thing that they have been able to give me that gave me any relief at all, which wasn't much. And he said, well, sure. But, you know, have you ever been tested for celiac? And I said, I've never heard of that before, but I feel certain that you're not telling me something that they haven't already tested me for. He's like, well, I just really feel like I should test you for that anyway.

Jules [00:26:20]:
I was like, I've had every test, and they said poke me, prod me. I don't care. And so I had the endoscopy, and he came I came out of it, and he said, you know, I sent your biopsies off. He said, but you totally have celiac disease. You have no villi left. I was like, that means nothing to me. I have no idea what you're saying, but if you're telling me that you know what's wrong with me, hallelujah. Like, you know, this has been 10 years of no one having a clue what's wrong with me.

Jules [00:26:46]:
And I said, what does that mean? And he says, you can't eat gluten. And I said, what's that? He goes, I don't know. I think it's in wheat. And I said,

Erica [00:26:55]:
But kudos for knowing what celiac disease was.

Jules [00:26:57]:
If you

Erica [00:26:58]:
don't know what gluten is, like, I'll take that any day.

Jules [00:27:01]:
Right. But this was in 1999. Mhmm. It's not like I could go on the Internet and figure out what gluten was Nope. Or what I could eat or whatever. And the I was like, the next day or 2 days later, I had to travel across the state and do a presentation, and I couldn't figure out what to eat. And so I went to the store, and I bought a bag of, York peppermint patties, and that's all I ate all day long. I just drove across the state eating your peppermint patties.

Jules [00:27:31]:
I I gave my presentation, drove back, and I ate your crepe mopatties all day because I didn't know what else to eat. Of course, I did all the the, you know, things everyone messes up and does. I ate the rice krispies because I thought that they were fine. You know, I I did all kinds of things like that. Took forever to figure out how to actually live gluten free. But at least I had my accurate diagnosis of celiac disease and knew why I had all these other problems like anemia, you know, all these other things that came from that. But it was 10 years, and I you know, it's not for lack of trying. Obviously, I'd seen many, many doctors.

Jules [00:28:03]:

Erica [00:28:03]:
Yeah. And I think that that's your the average length. Right?

Jules [00:28:06]:
It is. Yeah. Because, like, it's now a thing. It's, like, 10 to 12 years. 8 years now. Mhmm. Okay. Cool.

Erica [00:28:13]:
I mean, that's still

Jules [00:28:13]:
oh, that's a long time.

Erica [00:28:13]:
That's a long time. Yeah. That's a long time. Yeah. And the fact that nobody gets the whole picture, you know, like, even mayo, when they gave me, like, when I was first diagnosed, they give you, like, a pamphlet. It's not like they're like, here's a g a reference for GI psychologists. Like, nowadays, it's like, oh my god. I would have loved to have, like, a one on one with GI psych to be like, yes.

Erica [00:28:39]:
I'm having all these struggles with eating different and being like and all these things and my anger is making flaring up all my other digestive orders and, like

Jules [00:28:47]:
My anger and natural past. Towards everything. Flaring up.

Erica [00:28:51]:
Makes me so mad all the time. You know, like, we're again, I say this every year, we're truly living in the best time to be gluten free because we had to deal with a bunch of shit that nobody else should deal with. It's ridiculous that that took so long and that you went to so many different specialists in GI departments. And Mhmm. It just wasn't a thing that people were, like, used to seeing, and now we realize how common it is. It's like, oh my god. Why aren't we diagnosed more people with this?

Jules [00:29:16]:

Erica [00:29:16]:
And we still aren't.

Jules [00:29:17]:
And and we are diagnosing more people. However, most people still are not diagnosed, so we we still have a long way up that hill to climb. So anyway, well, thanks for sharing your story. And, and her book, by the way, is called celiac and the beast, if anyone's interested in learning more about her story.

Erica [00:29:38]:
And Jules has, like, 18 books, so I don't know the titles of all of them.

Jules [00:29:41]:
Oh, thanks.

Erica [00:29:42]:
Have the one. So

Jules [00:29:44]:
Yeah. Well, the book that I wrote that's on celiac disease is called The 1st year celiac

Erica [00:29:49]:
disease in living.

Jules [00:29:50]:

Erica [00:29:51]:
It's like mandatory reading.

Jules [00:29:53]:
Thank you. It was, yeah, it was nice to be able to put, you know, all of my learnings in, in book form. Like

Erica [00:30:02]:
Yeah. And we went through things so you don't have to. That was the whole reason why I wrote that book. Like, I don't want you out to deal with things that I went through because nobody really told me. He made a pamphlet and went like, hey. Life is gonna be hard also. Don't eat fries made in the shared fryer. Yay.

Erica [00:30:15]:
Wasn't that

Jules [00:30:16]:
a thing? Like, nobody told me

Erica [00:30:17]:
about that. So or, like, regular oats. And that's why we're so, that's why we're so mad. All that is why we're just so angry all the time. Thanks so much for listening to this week's episode of You Had Me Eat. Please join us for another episode where we will be less angry at the world, possibly. Tune next time.

Jules [00:30:38]:
You have to tune in to find out.

Erica [00:30:40]:
You have to tune in if we're still angry next time.

Jules [00:30:47]:
Thanks for tuning in to You Had Me at Eat the number one voted gluten free podcast in the country. Remember to like and subscribe, tell all your friends, and we'll talk to you next time.