TRANSCRIBED INTERVIEWS (Appendix)
This page will be updated as more interviews are performed. Interviews may contain explicit language and unsavory details about health situations as well as may deal with sensitive subject matter. These interviews are completely transcribed by hand from recordings without edits. Interviews were recorded with permission for the purpose of transcribing and analysis for The Celiac Experience book project. Names have been changed to protect the identity of the interviewee, unless interviewee wishes to be public.
Interview: “Lisa” 2/3/2025 5:30PM EST (transcription incomplete)
Interview: “Lisa”
DIAGNOSIS
M: So you are a newbie
L: Yeah
M: The two things that I really want to talk about is your diagnostic experience and then the transition of learning how to eat gluten free and everything about having celiac. Um and kind of like what it’s been like for you to have to learn a new way of shopping, a new way of cooking, a new way of all of that sort of stuff. And then, probably a little bit on how difficult it is to actually be gluten free because as you know you still get sick all the time. I know I told you this, I still get sick all the time and I’ve had it for twenty years.
L: Yeah yeah
M: And its just hat our food system really really really needs to catch up.
L: Absolutely
M: Because gluten free foods are not really gluten free and um, yeah
L: And some things are not labeled at all.
M: oh yeah, so many things are not labeled at all. So we will talk about that at the end and let talk right now about your diagnostic experience. So when did everything kind of start happening for you?
L: So now that I know it, I can think back really my whole life about certain things. But what really was the tip of the iceberg was several months of just severe digestive changes and issues that weren’t really explainable. And then in October (2024), I got to a point where I was passing blood through my stool and I had diarrhea for like 14 hours straight and I had no idea if it was like food poisoning or whatever and I went to the ER and they told me to follow up with my primary care physician. And then when I went to my primary care physician, she looked at the bloodwork and the stool sample and everything they took at the hospital and she sent me straight to a GI specialist. So within two or three days after that I saw a GI specialist and they really just asked what all my symptoms had been. I would bloat after anything I ate at all. My stomach was distended out and very hard to the touch and that kind of thing and I just felt terrible all of the time. And so the ordered a colonoscopy and an endoscopy because they didn’t really know what they were looking for. They just had a whole myriad of symptoms. Um, so that was all in October. My procedure was November 11th (2024) and up until then I had kind of stated eating more gluten free but I didn’t realize that was what I was doing. I just ate what didn’t make me as sick. So it was just very basic meat, vegetables, fruit. That was really it at the time. Because I was just trying to eat something that wouldn’t make me sick. And then it was after the procedure, it was about five or six days. Then I got a call from my gastro doctor and he stated that through the biopsy of the endoscopy it was very severe celiac. He labeled it a stage, 3a or 3b, so I’m really familiar with what the different stages mean but he said the words severe….
DOCTOR INSTRUCTION MINIMAL
…And he pretty much told me, the stores have everything you need now, everything is a lot easier. Eat gluten free. That was it. No explanation, nothing.
NEW DX _ RESEARCH _ MEDIA CHAR GDT – community
It was very overwhelming but I am a big researcher, I was on Chat GDT asking stuff. I was reaching out to people. Which I don’t remember the date where I reached out to you but it was soon after that. And just trying to research everything I could about it. Um, I got glutened several times during that time period too from medicines and spices and sauces, everything. Toothpaste! Yeah it was just in everything. So um, I guess anxiety kind of took over and I began reading every single in gradient on every single label of everything I put in my mouth. And it was maddening almost. It still is. I’m definitely more familiar with it now. And you know have those resources that you have given me and other like the little support groups on Facebook. I became members of all of those. To see what apps to download and scanners for grocery shopping and um, all of that kind of thing. Am I on track?
CONTAMINATION – Gluten in everything
M: Yeah, you are good.
SHOPPPING
L: Shopping became, it still is, shopping is pretty difficult. Its very time consuming.
M: It is, it’s so time consuming. And it can be so frustrating.
L: I end up just kind of eating the same things over and over because it won’t take me as long to buy it all. Ahhh yeah.
M: I do the same thing. I only incorporate like a new thing every now and then, you know? Because also new things, even if its labeled gluten free, you are not really sure so like my whole process is I look it up. So take a product and google “is – whatever product – gluten free and then when I find it, I try to look for threads to see if any Celiacs have had problems with it.
L: ummm hmm
OATS
M: Yeah and I don’t eat any oats at all.
L: I do not trust them. Yeah
M: Nope, don’t trust oats. (laugh). Do not. I do not eat anything with oats or oat flour. There’s a lot of gluten free products that have oats and oat flour and it’s a hot topic among the celiac community and ahhh, no, I’ve gotten too sick.
L: Yeah, I thin since diagnosis, I’ve had it maybe once or twice and it still give me the bloating. Not necessarily, vomiting or diarrhea but it just made me feel not great. And then, some things that I have eaten. That another thing. I’m sorry I have ADD too.
M: It’s ok. I do too. And I didn’t even realize I did until I started watching these Tik Tok videos and videos on Facebook that describe like symptoms of women with ADD and I’m like oh my God, that is definitely me. Like, that, I didn’t even know. Because its different in men than in women. Or boys and girls. And I think that’s a Celiac thing too. I think probably from who knows developmentally. Like you said, lets go back to before we start talking about shopping and food. Lets talk about some of the things you now look back on and notice. Because I was the same way but I was notably sick from about age 8.
EARLY SYMPTOMS
L: Me too! Mine was very young. I was never able to really do sports. Like any sports I would try I would become so over heated like so quick that my whole face would be blood red, my skin would be hot and itchy and my hair would be ringing wet with sweat and since I have gone gluten free, I do not sweat like that anymore.
M: There you go. Wow.
L: I was known for sweating like that. So that’s one thing that has really changed that I have always had since I was little. Temperature regulation, I guess.
M: Oh Yeah
L: So then, skin issues. I was told forever that I had eczema. That is gone now. Um, for the most part. Unless I get glutened, then I have skin rashes and all kinds of stuff. Let’s see. I was actually physically sick a lot as a kid. Like I was in and out of the doctor all the time. I caught every virus that was going around and I still do. And I don’t know if that has to do with autoimmune. I’m not sure. Um, my hair has fallen out.
M: oh, yeah.
L: In the past four years, I mean especially since giving birth and stuff which I chalked it up to just having a baby. And its just crazy, my hair has gotten so thin. And now I’m taking a certified gluten free multi-vitamin thing that you told me about.
M: Yep.
L: And now I’m taking another supplement on top of that for hair, skin and nails that’s gluten free.
M: oh good.
L: So that is seeming to help a little bit.
M: I take so much stuff to combat everything. And my hair will do the same thing. And when I got real sick, it was so thin that I actually had to cut it short because when it started growing back I had two different lengths hair all over the place.
L: Oh yeah. I can see that. People just don’t understand all of this. Um, What else? I had a lot of balance issues. I don’t know if that’s related.
M: Oh yeah, that is. It is.
L: I still have balance issues.
M: What’s funny is, um ok…I was just watching a video today about that. Um, it’s called…whenever it affects the brain (gluten), it’s called gluten ataxia. And it can actually be so severe that you get dementia forever. It can be really bad. But the most milder symptoms, it’s basically effecting the cerebellum which effects balance. And I’ll have the same thing. And I literally was just watching a video about that today because I was like, let me look up gluten ataxia.
L: Laughs
M: I know, and I was like – crazy, but um, anyway. I’ll send it to you (the video).
L: Um, that and I’m trying to think of anything else. A lot of stomach issues. I always had a stomachache. I just never realized it was from food. When I was younger, you know, there probably wasn’t as much damage to my intestines and stuff so it wasn’t like right after I ate. It was just that sometimes, I would randomly have stomach issues. I actually, when I was 17, I had a colonoscopy.
M: Woah.
DELAYED DX
L: Because of similar issues. And they just thought it was irritable bowel syndrome, but they didn’t do an endoscopy so there would have been no way for them to realize that it was celiac so um, then things kind of got a little better until they didn’t I guess.
M: Right, yeah um, it’s funny like how we kind of know, because I did the same thing with eating when I was in high school. I became a vegetarian.
L: Yeah
EARLY SIGNS
M: But what that ended up meaning was all I ate was rice and broccoli.
L: Laughing hard – Yeah, you were just trying to figure out what didn’t bother you.
M: Yeah and fruit and ice cream. And I had a lot of problems with like hypoglycemia. I would have low blood sugar. I would have low iron. I was always anemic. I was always all sorts of things. And I…I guess I adapted to doing sports stuff because I was a swimmer and gymnast and stuff, but I always had an issue to building strength.
L: Oh?! Yeah, building muscle.
M: Yeah, with as much as I did, I should have had so much more muscle.
L: Huh
M: Yeah, and, yeah so you know…being a swimmer, you don’t have to have as much. Like that ended up being my main thing kind of. Um, so anyway, yeah, I don’t know. I didn’t find out until I was…it was 2005. I was like 29…I was 30. It was right before I turned 30, so I was technically 29, but it was like…my birthday is in May and it was like January/February…something like that that I found out.
PREGNANCY & FERTILITY
L: Did you have a child at that point already?
M: Yeah. I had already had…I didn’t have…What’s crazy is that not only did I have celiac undiagnosed but I had endometriosis that I had had four surgeries for. I had three before I had my first kid and then I had another surgery and I had my second. But what’s funny is that both the first and the second, I was on the pill.
L: Oh!
M: And I wasn’t absorbing it because I had celiac and I didn’t know!
TRIGGER THE DISEASE
L: WOW! That’s crazy. And that makes me think…I had PCOS. So, um I wonder. Don’t they say that sometimes traumatic events can `trigger it?
M: Yes, I know what triggered it for me.
L: I got real bad after pregnancy.
M: Oh there you go, yep. I’ve read that pregnancy can in fact make it a lot worse. And its true that after I got pregnant it was worse. I just got increasingly worse through the years. But for me what happened with me when I was um 8, or 7 almost 8, I was not quite 8, but an older 7 year old, I got scarlet fever.
L: Oh ok.
M: For a month. And that’s what triggered it.
L: Yeah, I can see that. And isn’t that strep related.
M: Yes
L: And I know that strep can have long term effects. I had reoccurring strep every year when I was younger too.
M: Oh wow.
L: wow, ok so that’s hmmm.
M: And what’s crazy is that um, so that strain of scarlet fever, I knew two other people who got it in the same family as one another. One of them…they both have now Type 1. One of them got Type 1 right after that scarlet fever and the other one got it much later like in college but he has celiac too.
L: Oh.
M: And then some other girl that I met though Zumba network, she has lupus really bad and her symptoms started the same year and also got scarlet fever that year.
L: Oh my gosh
M: I know.
L: That is really, hmmm.
M: So something about that strain, there is obviously a connection. So that, the stomach and I have interstitial cystitis which is an inflammatory bladder disease.
L: Oh, ok.
M: And that started at the same time as well.
L: Oh my gosh.
M: And when I get glutened, my bladder will act up. They play on one another.
COINCIDING ISSUES
L: Hmmmm. So, having one autoimmune, you are more likely to have more than one autoimmune?
M: Yes, and especially celiac. Because my understanding, you know, obviously I’m not a doctor, but my understanding is that basically like if your autoimmune, especially with celiac is like in overdrive, then it just goes kind of like a snowball effect. Out of control, just like attacking other parts of your body. So like, I have a whole list of autoimmune problems. Like, I have also lupus. They thought it was rheumatoid arthritis, but then it turns out that I didn’t actually get any damage to my joints over a series of like ten years. It was showing up in my bloodwork, but there was no joint damage, and that’s really the only way they could deduce that it was lupus and not rheumatoid arthritis. Because the blood is pretty much the same. And then you know, I have thyroid…I take Synthroid. That’s like autoimmune. And um, I started taking that when I was like 14. And anyway, endometriosis, which is also autoimmune.
L: Yeah, oh my gosh.
DIAGNOSIS
M: Yeah, so you know, there is a whole list and Type 1 especially. I think that something like 60% of people with Type 1 get celiac. Most people with Type 1 are tested every year for celiac.
L: Oh my gosh.
ML And a lot of them find out being completely asymptomatic, because it will just like, pop in one day. But it won’t have been long enough to have so much damage to where they are feeling bad so. The two friends of mine that are type one and have celiac; one of them got Type 1 and then started having celiac symptoms really bad for about 2 years and then found out. The other one just literally walked into his doctor for a yearly checkup and found out that he had celiac.
L: Wow.
M: No symptoms
L: See they never ever did bloodwork on me because I got the endoscopy and they were like “the biopsy is the gold standard”
M: It is.
FOLLOW UP
L: So he was like “you have it.” I immediately went gluten free when he called me that night. When the doctor called me and everything. I’ve been gluten free ever since then and they told me just to come back this coming November and actually do bloodwork and then set up a bone density scan. So, that’s crazy. Um, I didn’t even know you could get that paid for by insurance before age 65.
M: Yeah.
L: But I guess if you have this diagnosis, its medically necessary.
M: Yes, totally.
L: So yeah, I won’t go back until November and I think they said I have to repeat the endoscopy and colonoscopy every three years because at the same time they biopsy the intestine, on the opposite end in the colon, they found a cancerous polyp. So, which is most likely related to having celiac, because you are at higher risk for the cancers and stuff.
M: Absolutely.
L: Man, it’s crazy.
FAMILY DNA –PARENTS KIDS
M: It is crazy. So are there any other people in your family that have celiac that you know of?
L: Not that we know of.
M: It’s somewhere.
L: But we really, really know…I feel like my mom has it. She has similar digestive issues and like uhhhh chronic heartburn and gastroesophical reflux disease, you know. I really wonder if she has it. I have told her, “You need to get tested if you are in my immediate family but, um she said that she would tell her doctor whenever it is time for her colonoscopy, because she has had polyps too before.
M: Oh wow.
L: I just really really think that…we are a lot alike. Genetically…well, of course, we are, but, you know, I have a lot of her issues. I get, like we both have a heart valve defect. And…
M: Oh do you have mitral valve prolapse?
L: I do.
M: I do too.
L: You do?
M: Yeah, I do.
L: Oh God, is this related?
M: I don’t know.
L: My mother also has a thyroid issue.
M: Ok, the thyroid for sure, 100%. The mitral valve prolapse, I’m not sure, but I mean, seems like it.
L: Could be.
M: Yeah, mitral valve prolapse runs in my dad’s side of the family and my dad’s side of the family is the one…I think my grandfather had celiac, because well, genetically a lot of Irish people have it. And a lot of Italians have it as well. But its prevalent in the Irish and Italians so its funny, but um…
L: I think other countries proactively test people.
M: Oh yeah.
L: Which is so great.
M: Italy is one of them. Italy tests all babies because they have something like a 3% occurrence of celiac. And I know Irish also has a high occurrence of celiac, but anyway…My grandfather is Irish-German and he got stomach cancer. He was super healthy. Never ate anything processed and never drank and never smoked. Nothing. And he was only 75 or something like that. And so, stomach cancer that moved to colon cancer. So, I really think that he had it, and I think it came from his side of the family.
L: Probably so.
M: It makes the most sense.
L: I wonder about my son.
M: Yes.
L: Because he seems to have a lot of my stuff to so, um, at his four year checkup in April, I am going to go ahead and tell his doctor that I have this and that the GI doctors kind of want you to test immediate family and I’ll just go ahead and see if they will do it, at least the bloodwork part.
M: Yeah. It’s hard with the kids, because you know my two littlest ones have it. And Kennedy had symptoms, like both of them got symptoms actually. Kennedy had a rash and we couldn’t get it to go away for like a year. And he was only like a year and a half old. It was basically when he started eating gluten is when he got this rash right? And then as he got worse with it, he ended up having terrible diarrhea and like ten bad diapers a day and stuff.
L: Oh wow.
GOLD STANDARD DX
M: And at that point, I knew. Like, he is celiac. And they like tested his rash and um, basically ran bloodwork and stuff but he never got the scope which is the gold standard and doctors don’t like for that to happen, but the problem is they have to be eating gluten to get the scope.
L: Umm,hmm. My son does still eat it at school. So I guess it would still show up in his bloodwork if he got it.
M: Probably.
L: Can they just test for the gene?
M: You can get genetic testing done, but its not going to guarantee that he has it kicked in, like active celiac.
L: oh.
M: And your doctor won’t say that he has celiac, right? But if there is a list of symptoms….so what my doctor, my pediatricians ended up doing is that basically they were like, well, because it was the same thing. The kids were eating gluten free mostly at home, mostly. There would be sometimes they wouldn’t like order pizza, stuff like that. It was enough of not eating gluten free to have symptoms obviously. And eating gluten at school for breakfast and lunch. So they basically were like, well…based off of all their symptoms and the fact that I have it they diagnosed them with having celiac um, “ad historium.” That is what they called it. So it’s not the gold standard, but it was kind of like, well what are you going to start giving him gluten like, they are going to be eating gluten free at home anyway.
L: Right. And if you don’t have to put then under then that’s better.
M: Right, exactly. So it’s kind of a choice you have to make but here is the thing, if he is celiac just like all the rest of us, he is going to end up getting contaminated and you are gonna know. So that is like your confirmation is that, you know. When he’ll get contaminated and he will get sick sometimes and you will know because if it is something you both ate, it will be like, oh we both ate this. This is a game we play at our house. (Laughs) Because there is three of us, so it’s like we can kind of deduce based off of like all three of us ate this or like two of us ate this and you didn’t and you are the one that is fine and we are the ones that are sick, right? (Laughs)
L: Ummm
DIAGNOSTIC TOOL
M: So yeah. That’s a thing that we have going on a lot when we get glutened from going out or whatever it is. Um, yeah, so you will know, because once he goes gluten free, getting contaminated will make him sick just as much as it makes you sick. So, um, yeah, but you’ll figure it out, but it sucks. There is no good diagnostic. The best diagnostic tool is for them, for us to all be sick enough for us to have a biopsy?
L: Right
M: That’s total bull shit. You know?
L: Yeah absolutely.
M: Yeah, it really is. It’s total bull shit. It’s the worst diagnostic tool.
COST
L: It’s so expensive too. You know?
M: Yeah. So, all right. You were already eating gluten free and so, because you didn’t feel well. I was the same way. I didn’t feel well. All I really wanted to eat was rice and I ate shrimp and some broccoli. That was pretty much it. Even broccoli I didn’t eat that much of, because it’s kind of rough. With the bladder thing, anything acidic sets it of too, so like all the fruits and stuff, I didn’t want to eat that either. Um, for me I couldn’t eat dairy for about four years. It bothered me for four years before it got a lot better. And I’m not heavy on the dairy but it is a lot better. So what was your process with how you went about eating. How did you start eating that night and since then?
EATING GLUTEN FREE AS A NEWBIE $$$$$$$$$ & CC
L: Um, I kind of…Okay, I was very overwhelmed about the thought of cooking things myself at first. So honestly I spent way too much money and just ate literally Taziki’s almost every single day. Sometimes twice a day. It was like a safe space for me there. I had never gotten sick. When I was trying to figure out what was going on with me, um I just…and I don’t really like pita bread anyway so I never ate the bread so almost everything else on their menu is completely gluten free. Um, so I kept eating out which I spent hundreds of dollars while I was doing the research and stuff. And my family would try to help us out because they know, gluten processed foods are expensive and stuff so… I think what we all tried to do is replace everything that I was previously eating with gluten free stuff and I still got sick. That’s when I realized even if its certified gluten free there is still a minute amount of gluten in it. I don’t really know what my threshold was of what amount gets me sick and what amount doesn’t.
M: Right
NEWBIE CROSS CONTAMINATION CGFF & DEPRESSION & APPS
L: I didn’t eat everything that they bought for me, because it was still making me sick. So I just kind of got depressed and was like I’m just gonna eat meat, potatoes, vegetables and fruit and all of that. And I did that and definitely felt better. I mean I felt overall better than I previously did by just eating the processed gluten free stuff versus real gluten stuff. But over time, over the next few days and stuff, I found out about the gluten free scanner app. That was a real big deal for me.
M: Which one is it that you use? I don’t even use one.
L: It’s just called GF Scanner.
M: Oh ok, I’ve seen it in the app store.
GF EMOTIONAL TRAUMA - IDENTITY
L: And its not fool proof. There are still some things that are not even in their system, but overall it helped me get a good idea of things. And then I would just Google everything else. And over time I did start to implement some, but very few processed foods. And then, I felt really great and all that. Then depression came in about morning food. Like I felt like my freedom was being taken away. I still feel like my freedom is being taken away. I know that is really dramatic. At least, to somebody that doesn’t have celiac, I think they think I’m dramatic.
M: Right
L: But this is real. This is completely turned my life upside down.
M: Oh for sure.
L: I was such a foodie before this. Like, I loved food. I loved going out and trying new places in different cities and any kind of different country I’ve been in. I love trying ever local cuisine. And I actually was feeling like I have to question how people are making things, what spices are they using.
M: Yeah
SOCIAL - HOLIDAY!!! THANKSGIVING – GF as FAD
L: I did not go to Thanksgiving with my husband’s family. I couldn’t. I was too scared that I would look like a snob, because I would have to look at the labels of all their stuff that they cooked. I felt like they would think that I was ungrateful so I just didn’t go. It was a lot of little things like that. It was very hard to acclimate to being social again or having the guts to even mention my disease to a restaurant. That kind of a thing. Very hard. It still is very hard. I cringe because going gluten free a few years ago was somewhat of a fad for people who didn’t have this disease. They have kind of ruined it for those of us that actually have to have it because I think restaurants don’t take it seriously sometimes. They think we are just trying to lose weight or whatever. I don’t know.
M: Yep
L: But yeah, it’s been a struggle, but the transition itself is a lot better, because my mental state is a lot better, I guess. I think it was a process of mentally figuring it all out.
M: It definitely is. I went through all of that exact same process, except it was a little bit different because there wasn’t a lot of gluten free foods at the time.
L: Oh my God. I can imagine.
M: It was 2005 and there was nothing.
L: No body knows about it (then).
M: No one knew about it. Everyone thought I was just diabetic because they would confuse gluten with glucose. Ok.
L: Oh gosh
M: Yeah, so um, so I remember Brian, we were in college. We were in grad school and we saved up $300. He gave me $300 just to go to Whole Foods.
L: Oh my gosh, yeah.
M: And I walked through Whole Foods, and remember I also needed dairy free because I couldn’t eat dairy at all. And um, I was there for about three hours. I called him on the phone crying because there was nothing for me to eat.
L: Oh man.
M: There was no gluten free stuff. It was all organic and that’s it. And then it was about 2010 that the fad started and all the products started coming out and it was so much better and exactly what you said, um it became seen as a fad diet. That’s actually part of, when you do the questionnaire there is a media section of it and there are some videos that you can watch and then respond. But basically there are some comedians. Like basically there is a montage of comedians that do gluten jokes, like making fun of. But I actually found out as I was doing my research that part of the reason that ended up happening was that at that exact time, Schlar which makes really good gluten free food.
L: Oh yeah.
M: Well the owner of that company is a medical doctor, he is the one that started doing research on non-celiac sensitivity. But also had this commercial opportunity that benefits him. And he is the one that sort of started prompting this non-celiac sensitivity which there is no testing for which basically comes down to patients saying, “I feel better when I eat gluten free,” right? And um, now some of those people are actually undiagnosed Celiacs so they aren’t non-Celiacs, right. And there actually is a neurologist that I saw, I can send that video to you too. He is a neurologist so he is not studying the colon, GI system for celiac. He discovered celiac, people with a wheat allergy or gluten allergy and people with non-celiac gluten intolerance, all have the same type of brain damage from his point of view and that would be the gluten ataxia. It was from him that I first learned about it. It was from watching his video. So then, you know, something is definitely going on but it’s not caught up. They consider people who call themselves gluten sensitive is still an eye roll in the medical community, however, um it kind of took off because of the commercialization of gluten free foods.
L: Hmm
39
M: Then that was also when the Wheat Belly book came out and another book that’s similar that’s when it was like “gluten is bad for everybody and that’s where everything went wrong for us with celiac. And that’s when even the gluten free foods became less safe. So it’s like you have more of a selection of gluten free foods, but less safety. So, it is very frustrating.
L: Right
M: That’s funny you talk about Tazikis, because first of all, I love Greek food. My boyfriend is Greek. But anyway, I worked on the owner of that Tazikis in Memphis, I worked on that owner’s sailboat.
L: Woah
M: He bought a sailboat down here and was here for like a month. He owns like a bunch of tazikis and other restaurants.
L: Oh that’s cool.
M: Yeah, but he owns that one. He’s from Alabama. But yep. That’s funny. That place is so good. Greek food is so good.
L: Yeah. It was just such…And I always liked the idea of a Mediterranean diet.
M: Yeah.
L: Because it didn’t make me sick and I knew just from working in the Alzheimer’s field and stuff like that. I knew that it’s good for your brain.
M: It is.
L: The oils and that kind of stuff. So I always lean toward ordering things that are somewhat middle eastern. I just like it.
M: Yeah, me too, I’ve always liked it.
L: It just makes me feel good.
SOCIAL
M: Yeah. So, I like that you brought up two things that I love talking about. And what I focused on in one of my last interviews is the social aspects. Like you skipped Thanksgiving.
L: Yeah yeah. I’ve skipped some parties and stuff too. Just because I just know there is not going to be anything for me to eat and I, at the time, I wasn’t confident. You have to like build up this confidence...
M: You do.
L: That is so foreign usually. Usually at restaurants I am all about do not say anything about the meal or they are going to spit in your food. Be nice to your server. I just don’t want to cause any kind of problem. It always feels like I’m causing a problem. But now, I’m like, I deserve to eat too. You know?
M: Yeah
L: So, I am so nice. Of course, I’m nice. I’m just letting them know what will trigger me. Like Firehouse Subs, they are okay at cross contamination.
M: Yeah, I haven’t tried them. I don’t try any places, because I got sick from Jimmy Johns too many times.
L: Yeah, I have been okay a couple of times, but the last time I went it was a bunch of teenagers working and even though I literally watched them change their gloves and I watched them do my whole sandwich prep on a clean piece of foil and put the foil in the oven away from the other sandwiches, I still got sick. So you know I just feel like sometimes it is unavoidable in a sandwich type shop. So I had to kind of mourn sandwiches, because I can’t stand gluten free bread. It is just, it’s not good. I have yet to find an actual good one.
M: Have you tried the Texas Toast that’s in the freezer?
L: Ohhhhh
M: It’s good!
L: Like the garlic toast and stuff?
M: Yeah. It’s good. It is good.
L: Okay. That sounds good.
M: And it’s soft. Yeah.
L: Well, that would be good. Right now I tell my husband all the time whenever we go anywhere or anything, “I know it’s safe because it tastes a little bad.”
M: (laughs) No, it’s true. Whenever it tastes too much like normal gluten
L: You gotta question it.
M: Then you get scared. Hey do you guys have a Coopers Hawk in Memphis?
L: No, I’ve never heard of that.
M: It’s like a wine chain. Um, yeah it’s a wine chain, but they make a gluten free bun and they have a gluten free menu. They have a gluten free bun they will bring it to you. So they bring bread to your seat for you to have bread like everyone else.
L: Ahhh
M: You gotta come down here, because there is a lot. There is an Italian place here, it is so good.
L: Ohhhh
M: They make everything from scratch and the owner has celiac.
L: Oh gosh.
M: They have like breaded and fried calamari. They have tiramisu. They bring gluten free bread to your table. They have gluten free pizza. Everything.
L: That is crazy.
UPCHARGING
M: And it is so good. It is really so good. It’s a little pricey but it’s fantastic. As with everything they like upcharge it. They have a separate section of the kitchen just for the gluten free stuff.
L: That’s good.
CELIAC RESTAURANT OWNERS
M: Yeah, I find that I like finding places like that where one of the owners is celiac. Um, we had a similar experience in Key West. Once of the owners was celiac and his daughter was our waitress…We ordered pizza and she said she was going to even watch them make it because she said “I know how sick my dad gets.” She didn’t even give us regular utensils. She went and got the plastic ones that were all wrapped up.
L: Oh yeah.
M: Yeah, all of that stuff. And we didn’t get sick. And it was amazing.
L: That’s nice.
M: It was so nice.
ABOUT SYMPTOMS
L: I couldn’t imagine being an asymptomatic celiac, because like how do you even know that you are being glutened. You know? It’s just, that’s scary.
M: That is scary.
L: Yeah, I have heard of people that don’t have any reaction. And some of them, even on the Facebook groups, some of them are like, oh I messed up and cheated today and ate gluten. How do you just cheat and eat? No, no. It’s never even crossed my mind to cheat.
M: No.
L: Because I at least feel the symptoms. I guess if I didn’t feel the symptoms, that could be more tempting I guess. You still know that it’s damaging you from the inside out.
M: Yep, the kids’ pediatric GI. She was very interesting in fact I want to try to get ahold of her, but I know she moved up to Orlando. She had crohns and had her entire colon removed and found out that she also…she diagnosed herself pretty much…she also had celiac.
L: Oh my gosh.
M: So she had celiac too, and so that’s like her main focus. She was saying how she has teenage patients and stuff that just cheat all the time because they don’t get very sick or sick at all.
L: Oh my gosh.
M: She had one of them, the last time we saw her before she moved…sixteen years old stage three or four colon cancer from celiac, from cheating all the time.
L: Oh my god. Oh that’s terrible.
M: Yeah. Dying of cancer.
L: Geez.
M: So it’s nothing to mess with.
L: There has to be so many people in that have it but are just not diagnosed.
M: I think so.
L: I bet the numbers are through the roof.
M: I think so. I think that Italy doesn’t have more Celiacs. I think that Italy tests so many people that they find all the Celiacs.
L: Ummmhmm.
M: And I think that world wide that probably the average of everywhere is 3%. And here’s the other thing. They found where it came from and it came from Neanderthals. And guess what their rate was? 3%.
L: Ohhh
M: 3% Celiac in Neanderthals. So, um, you know basically ever since humans have been cultivating and eating wheat about that many of us, about 3% have celiac. And I don’t think that anything has changed. I think we just have a terrible diagnostic issue.
L: Because Big Pharma owns everything and they want us to stay sick all the time and that right there, oh my gosh.
M: They do. Yeah, it’s bad. So let’s talk about some of the social medias and the apps and stuff that have helped you. You know, people complain about social media but social media is amazing for people like us.
SOCIAL MEDIA AND APPS (LEARNING MORE THAN FROM DOCTORS)
L: Oh my gosh, yes.
M: I can’t tell you how many times I have looked something up. That I have found a thread on it. And that’s how I know not to eat oats. Plus we got sick off of Cheerios despite their gluten free claims, that’s a whole can of worms there. But yeah, it’s such a big benefit for people like us.
L: UmmHmm
M: I understand that there’s other things that people go through…hardships or ailments…that having the community support on Facebook helps them and stuff. Like cancer survivors or breast cancer groups and stuff like that. But I think that even more so for us with celiac, because everything we eat, we have to know for sure. You know, multiple times a day…three times a day or six times a day or whatever. Everything we eat, everything we drink, we have to know. And having a resource of a group of people to talk to it about since labeling isn’t always transparent, is so important and so helpful for those of us with celiac disease, you know? You can find something where people are like, “oh I got sick off of that even though it’s labeled gluten free.” Or you can send it to the Gluten Free Watchdog. There’s that.
L: Yes yes, so that one I follow and you told me about the Gluten Dude. I have that lifetime membership on the app and I follow him on Facebook.
M: Good.
L: I have a lot of Facebook support groups. Some of them are Celiac specific and some of them are just Gluten Free specific and then oh my God, Tik Tok. I’m serious. In 2020, I thought Tik Tok was just so stupid and just kids dancing. No. People want to share. Even doctors are on there wanting to share stuff. I just learn so much from it. Fellow celiac people and they’ll be like “go shopping with me today or make this with me today or go to the doctor with me today. All these things. Facebook, Tik Tok, Gluten Food app, GF Scanner and I’ve heard of Fig but I did not get that because it has a membership fee, so I did not get that.
M: I haven’t gotten it either.
L: Have you heard of Fig
M: Yeah, I’ve heard of Fig, but I didn’t want to pay the money.
L: It’s a more in depth scanner.
M: And then there’s the Atly one, I don’t have that either.
L: Oh yeah, I’ve heard of that too.
M: I’ve heard mixed reviews about that one.
L: Hmmm, ummm. Let’s see Reddit definitely. I read a lot on Reddit. Celiacs of Reddit or Gluten Free of Reddit. I’m friends with some Memphis Group that’s Celiac Memphis or something like that. Gluten Free Memphis maybe what it is. Um, that’s kind of helpful because there aren’t really a whole lot of options in Memphis of food and stuff.
M: No there aren’t.
L: I definitely learned more from social media and you. And Chat GTP, I love Chat GTP. I’ve learned more from all of those things than the doctor. He pretty much threw me for the wolves.
M: Crazy
MEDICATION CC
L: “Yeah, it’s real easy now (recalling what the doctor said), It’s everywhere, just make sure it’s labeled gluten free,” No that’s not everything. You (he) didn’t tell me about Advil. He didn’t tell me about sodium starch glycolate in my Claritin. He didn’t tell me about Benadryl. I don’t even think the pharmacists are aware of how it is.
M: Oh, they are not. They have no clue. No clue. It’s hard to find. You know how to look up your pills? Like if you get a pill, if you get a prescription, you pull the pill out and its stamped. That’s the drug maker and you can go to their website and their website usually will say whether they are gluten free or not.
L: That’s good to know. Okay. I definitely have looked, like if I drop a pill and I want to know which one it is, I will look up “white oblong S23”or whatever and it will tell me the name of the drug but I haven’t actually gone into looking into the manufacturer.
M: Yeah because the manufacturer matters because with the thyroid stuff for example, some of the generics are not gluten free and some of them are. But how do you know which generic you are going to get? You have to actually look at the manufacturer and you have to actually look at the website.
L: That is so scary. And you almost died.
M: I almost died. From that. From my thyroid medicine.
L: Yeah.
RANDOM STUFF CC
M: There is an Instagram lady called Suki (Sukipwd). Suki the dog, she has a gluten sniffing dog and Suki is the dog. Look up Suki the gluten sniffing dog or something like that on insta. And um, you know after that happened where a bunch of Celiacs got sick from the Synthroid, they corrected it for the most part, but every now and then she has found gluten again in her thyroid (medicine).
L: Oh my gosh.
M: Yeah and she will send it back to the manufacturer and they send her a new one (pill bottle). But, um, it hasn’t happened for a while but it has happened. The dog is accurate. Like the dog is so accurate, I wish I could get one of those. They are 20 grand.
L: Oh wow.
M: Yeah, I know. That’s just for the full training. It takes a year to train them. So, yeah, there’s got to be some way to make that cheaper. Because that is the most accurate way to know. And the dog alerts on all sorts of stuff. Like paper plates, napkins.
L: Oh, like crumbs and stuff anywhere?
M: Well no just like the manufacturing.
L: Oh my god, there would be gluten in paper plates?!
M: Yes, this is what I’m saying.
L: Oh my god. This is crazy. Why?!
M: I know, it’s so crazy. It gets to be too much. So then you are like, to go boxes and anything made of paper. Drywall. Drywall is not gluten free and the putty.
L: Oh my gosh. Uhhhh.
M: Yeah so if you are doing work, don’t do drywall work. Yeah, and the drywall adhesive, the spackle stuff is not gluten free.
L: Wow.
GETTING SICK ALL THE TIME
M: Yeah it just gets so stupid. Where you are just like…Again, I get sick all the time and I’m super strict about it. And, you know, we are always trying to figure out what it was that made you sick. And um, sometimes I’m just like, I give up. I just have to accept that sometimes I’m going to get sick no matter how hard I try.
L: Yeah.
M: And that’s when you have to stay on top of the vitamin thing.
L: Yes.
M: Yes.
VITAMINS
L: So with these vitamins (CELIACT BRAND), you said you crush up one to make it more absorbable.
M: I do.
L: I have done that. But do you only take one a day. Because it says something like three times a day.
M: Yeah, I take one. I take one a day. And I don’t even take it every single day, because I have a bunch of other vitamins I take too, you know. So like I always take one a day if I have been glutened. And then I’ll take like one every few days if I feel like I’m doing pretty good, you know.
L: Okay
M: And then, I also um, I also have…like I got a vitamin B12 deficiency several years ago, like in 2012, from getting glutened so many times on vacation. They thought I had MS, I was that…
L: Oh my God.
NEUROLOGICAL EFFECTS
M: It was that bad, I was at the neurologist and stuff and it turned out to be a vitamin B12 deficiency, very severe. So they were like, you just need to go and get the liquid B12. That comes in like 10 thousand milligrams, or whatever it is or whatever right…and take that. So I’ll take the super high dosage of liquid B12 and time I’m glutened. I literally just bought some yesterday. Because I started doing like….I’m like a fucking space cadet all of the sudden, you know?
L: (Laughs) Yeah.
M: So I have noticed that I have been really clumsy lately. Like, I’ll drop stuff. Or I just kind of like, will be clumsy, you know, like I’ll trip over something that I shouldn’t, You know what I mean? That’s the kind of thing that says to me, like okay, you are vitamin deficient. Clearly you have something going on, because it’s not normal.
L: Mine was a little low, but my iron was even more low. I have been taking one of these every day. I did buy like a dropper of elemental and methylated B12, but I don’t take it every day. Like, I’ve only done it a few times and I got that off of the Tik Tok shop. It is gluten free and um, but yes like a dropper full or something. It’s the vitamin brand called Triquetra or something like that.
M: Oh I haven’t heard of them.
L: Um, but I definitely take the Celiact vitamin every day. I don’t know it its placebo effect or whatever, but I do feel better.
BRUISES
M: I do think it helps, I really do. Like I said, I only take the one. And I start noticing other…I just went out and bought D3 yesterday. And I started getting…I get bruises whenever I’ve been glutened a bunch. I bruise easily.
L: Oh my god, that was one of my main symptoms. That is something.
M: Yes, bruises.
L: That is something that I have had since childhood too.
M: Yeah me too.
L: Easy bruising. Is that a celiac thing or an iron thing?
M: Totally.
L: Ok.
M: And vitamin K. Vitamin K deficiency can cause bruising. That’s another fat soluble. So every fat soluble vitamin.
L: Oh.
M: So what happens to me is that my knuckles. Like on the joints of my fingers I get bruises. I’ll have bruises on my fingers, just random. Not from injury. So like today I have two bruises on my pinky finger so there is one on each joint…I guess I need to buy some more vitamins. I’m clearly deficient, you know?
L: Yeah yeah.
BRAINFOG
M: And the other day I did the stupidest, like I was so embarrassed. Nick and I were going and he always opens the door for me, right? Well, he went around and he opened his door and then he went around and opened my door for me on the passenger side for me to sit because we were taking his car. And um, I went and sat in his car in the drivers seat.
L: Laugh
M: And he’s like, “What are you doing?”
L: Laughs
M: “What AM I doing, I don’t know!” I’m like that’s embarrassing.
L: I do have some stuff like that that has happened too. Yeah. I do things like that but I always chalked it up to being kind of scatterbrained, ADD kind of thing. Just like, but certain days when I’m sick, I definitely have more brain fog.
COOKING
M: Yeah totally. Crazy. So let’s see. So now have you started cooking for yourself?
L: Yes, yes and I enjoy it much better now. I have a whole routine down. There are certain things…like the majority of the time my husband and son eat gluten free with me.
M: Yeah.
L: But there are certain times where they don’t eat gluten free. They have gluten friendly bread, because my husband is diabetic. He doesn’t need real bread anyway. Um, so they eat keto-friendly bread and they have a separate butter container. I did buy those toaster bags, I don’t have any more right now. I need some that are reusable. Anyway, it’s like a parchment paper feeling, for toaster bags and for our air fryer too.
M: Oh right.
L: So um, even though the majority of what goes in the air fryer now is gluten free anyway, but just incase.
M: Just incase.
L: You know something. And also my brother in law, you know him, he lives with us right now. Um, so he uses the liners of the air fryer and the toaster bags too so that everything is super (safe). And he has his own dishes too. He is going to live with us for a year and then move to Knoxville.
M: Oh ok. It’s so pretty over there. That’s cool.
TAKING PRECAUTIONS
L: But yeah, cooking has become a lot easier. I know what to do now. There were times that I was like wearing gloves and stuff, just to make sure. I’ve had to be real careful opening things that are gluten related for my son. If we are out at the zoo or something and I open some cookies for him or an Uncrustable, I immediately wash my hands afterwards or I just wear gloves. It’s that insane. It has to be.
M: It has to be.
L: I’ve gotten sic too many times from it.
M: Right.
L: Um, and I enjoy cooking a lot more now because I kind of know what to do a little more now.
M: Yeah.
PROCESSED FOODS
L: And I know which of the processed foods don’t make me sick and which ones do. Um, some of the gluten free pastas, I don’t do well with.
M: I like the Beanzo? What’s it called? It’s the orange box.
L: Yes, something with a Z – what’s that called?
M: Yes, Banzo
L: That’s it. That one is good.
M: That’s the only one I really will buy because I have had problems with some of the other ones as well.
L: Yeah, definitely the ones from Walmart and Kroger I have not done well with.
M: No.
L: The Aldi one is good.
M: I haven’t tried it. I tried the Walmart, um, version of “hamburger helper,” I got soooooo sick.
L: Uh yeah. I haven’t tried that but it doesn’t surprise me.
M: Don’t try it.
L: Walmart’s labeling standards I feel like are kind of low anyway.
M: They are.
L: Definitely the quality is not always the best.
M: Yeah definitely.
L: Now Whole Foods compared to when you first got diagnosed, is like Celiac heaven. Everything there is perfectly labeled and they even have their meat labeled, local grass-fed, you know is awesome because especially like at the beginning of this, the iron thing is a huge thing and I was eating steak like every day and I was craving beef which is something I never really craved that much before. So I did well with grass fed beef and stuff.
M: I love Whole Foods, but I just cannot afford it. No, I know right. It’s ridiculous. I never go to Whole Foods because I can’t afford it. I mostly eat rice, corn tortillas and meat and vegetables. That’s pretty much it, you know. I eat peanut butter a lot of days. Just on celery or apples or on carrots is really good.
L: Oh?!
M: Yeah, it’s delicious. I get the carrot chips. Oh my gosh. And, it’s good with peanut butter.
L: Ohhhh! I got glutened recently on hummus.
M: Oh my God. Hummus can be bad.
L: I was so shocked that I was like “What?” But yeah I didn’t even read the label for that, because it’s like, “oh it’s just hummus.” No, it had a whole bunch of crap in it. It was some kind of mango jalapeno hummus. It was super good, but um, I immediately got sick.
M: I find that some of those flavorings are bad. Like with pistachios, the one that has um, the brand that has all the different flavors. Their regular pistachios are totally fine. And the chili ones though, are so good, and I feel like I get sick every time I eat those. So I stopped doing that, even though they are so good. I want them so bad (laughs).
L: Yeah.
M: Yeah.
L: We were at a friend’s house and he had some kind of bourbon whiskey that he had. And I told him that I can’t have that, it’s made with rye or something like that. And then he googled it and was like, no it’s gluten free through the distillation process. And so I tried it. I immediately got sick. Like, no freaking way. My face got blood red again. I started sweating real bad again. And my stomach was upset so I don’t trust dark liquor. I just don’t.
M: So I have been able to figure out which bourbons and scotches that I can drink and which I cannot. And there is a list. Definitely Makers’ Mark, Southern Comfort, Jamison…none of those are gluten free. But like um, Glenlivit Scotch which is pricey…
L: Oh that’s expensive.
M: Yeah it’s like a going out to eat thing right? Like I don’t even but alcohol for my house or whatever. But that’s fine and um, Jim beam seems fine; Jack Daniels seems fine; Crown seems fine. But I don’t even get flavored…the flavored stuff. Just straight up the plain stuff. And, you know, you are still taking a risk, maybe a tiny bit but honestly I have done pretty well with all of those.
L: This one was called Woodford Reserve.
M: Ummm, I don’t know that I have had that one. But Bullet Bourbon I think I have had that one and it’s fine.
L: I use to love Jamison. I really did.
M: Jamison is not gluten free. I use to love it too. It does suck. Glenlivit is and I think Dwar’s might be. So yeah, it is a risk. But I’ve gotten sick off of vodka.
L: What?
M: Yeah, vodka can be made with wheat. It’s not just made with potatoes. Tito’s is fine. Tito’s vodka is fine, but um, Nick had the Kirkland brand and I got sick off of that.
L: Oh my gosh.
M: And he had some New Amsterdam Gin and I looked it up…not gluten free. But Bombay Sapphire is.
L: Okay
M: So like even the white stuff you have to look at everything.
L: All I have been drinking lately is gin. If I have something it will be gin and pineapple juice, but it is that other brand…the Bombay Sapphire.
M: Yeah that one is fine. And that one is really good too.
L: Yeah
M: I like that gin.
L: Yeah.
M: It gets crazy with the liquors because you have to be so careful too. It’s just everything. The medications. Like you brought up the Advil. The ibuprofen…most of the Walmart brand ironically, most of the Walmart brand drugs are gluten free.
L: Yeah, some of them are labeled. Some of them.
M: But not the Publix brand. Like the Public brand ibuprofen, their coating is not gluten free. Their regular tablets.
L: Yeah.
M: And it’s just like wow, why are we doing this? Why do we have to be putting gluten in all of these things?
FAST FOOD
L: They are just cutting corners, I think. Filling it up. Oh! Do you want to know one thing that was a risk definitely, but I have yet to get sick from it was a crunchy taco from Taco Bell.
M: Oh what? I’ve never given it a shot.
L: I’m serious. If you look up on their website, it is one of the listed gluten free items that they are gluten sensitive. Like they can’t guarantee of course which they definitely don’t guarantee. I haven’t tried it in like a bad part of town or anything. I’ve only tried the one in Arlington (TN), but that really kind of has given me a little joy.
M: That’s amazing.
L: That I don’t have to completely give up Taco Bell. You know?
M: I haven’t had Taco Bell in forever. I love Taco Bell. But I tried just he beans and I tried something else from there and I got sick and I was like forget this. And I haven’t tried it again.
L: I have only had the crunchy taco supreme.
M: Ok. That sounds so good.
L: I do say, can you change your gloves before making this because I have an allergy. I just say allergy because they really don’t know anything.
M: Yeah, I do that too.
L: If you want to risk it you can try it but I can’t guarantee anything. All I know is the one that I go to does well.
COOKING
M: Okay. Noted, noted. Yeah I’ll give it a shot sometime. Um…about cooking I find…because I cook from scratch a lot, and I’ve always loved cooking. I find that once you are gluten free with celiac and you start cooking from scratch so much more that you become such a better cook.
L: Yeah. Definitely. I have not made it yet. What is it, King Albert.
M: King Alfred
L: Yeah, the one to one flour and I really really really want to make biscuits. Because I am really missing the freedom to just get a sausage biscuit or like biscuits and gravy. I could probably make gravy out of that too.
M: Yeah you can definitely make gravy out of it.
L: Add sausage to it and stuff.
M: Yeah
L: I’m missing the things like that. I cried over Pronto Pup. You know what a Pronto Pup is like at the fair?
M: Yeah.
L: Gosh. And I’ll never have one again. Pronto Pups are totally not gluten free. And regular like the store bought corn dogs are terrible. They are not good.
M: They are not the same. Have you had the Red Lobster biscuit mix?
L: Noooooo.
M: It’s good.
L: Do they have a gluten free version of it?
M: Yeah. It’s so good. You can get the mix by the Bisquick, which Bisquick also has a gluten free version of it. But the red Lobster gluten free biscuit mix, you can find it at Walmart, it is amazing. It even comes with the spices you put with butter to make the Old bay topping, but without the Old Bay topping, its just regular biscuit, you know? So you can make any kind of biscuit thing you want out of that. And I’ve made the sausage balls out of that too.
L: Oh I did make gluten free meatballs recently.
M: Nice.
L: With some breadcrumbs and different spices and stuff. And it was so good. I did it like, you know how people in the South do like barbecue sauce and grape jelly on their meatballs. I did it like that after I cooked them. I cooked them a little on the skillet and then in the oven and on the stove top I did it with the sauce and I let it marinate with the sauce. Oh my God it was so good.
M: That sounds really good. I make all eth Cajun stuff, cuz I’m from Louisiana. So I make all the Cajun stuff.
L: Ohh speaking of that, because you can’t even make a roux, except with I guess gluten free flour.
M: Yeah, you have to make it yourself. But oh man, thank God I know how to make all of the Louisiana stuff. The only thing from Louisiana that I really really miss is beignets and there is no replacement.
L: Oh my gosh yes.
M: There’s no replacement.
L: Oh that sucks.
M: It totally sucks. I mean, New Orleans itself is pretty good about trying to um, you know, have a bunch of gluten free options. Who knows? Maybe by the time I go there, there will be some gluten free beignets. The last time I went there, there was a lot of really good gluten free food. Um, I mean, I ate way too much. As one should in New Orleans so. I think I am going to try to make king cake, because tomorrow is Mardi Gras, so I think I am going to try. It’s one of the hardest things to make even not gluten free. So, um, there’s a lot of steps and all of that stuff. I think I’m going to try. I don’t know. I also, some part of me is like, I don’t feel like doing all of that work. You know what I mean? So I haven’t decided. But I keep going back and forth. I don’t know.
L: It would be good.
M: It would be good, but it is so much work. I would have to start tonight to be able to start making it tomorrow. Like, the dough has to sit over night and its yeast and you have to do a process of it. I don’t know, I cant decide.
L: Speaking of yeast. There are ingredients that I am leery of and one of them is yeast extract and like caramel color is one. Do you find that most of them are derived from something else?
M: Yeah nowadays most of that stuff is derived from corn. It use to be wheat but now it’s corn.
L: I’ve gotten kind of insane. I don’t even drink sodas anymore unless it’s the Poppi brand. I’m too scared. I’m scared it’s made from that.
M: Well, my kids can attest to all the sodas are fine (laugh).
L: well, that’s good to know.
M: They drink all the stuff like Dr. Peppers and Mountain Dews, you know Slurpees, so they are fine.
L: Well that’s good to know. Yeah. I do like those. Well, I wouldn’t say like but I’ve gotten use to the Poppi brand.
M: Yeah those are good. They are expensive though.
L: It is. I would like the freedom to just be able to have a Coke at like a restaurant or something.
M: Yeah, definitely. I haven’t had a problem with any of the sodas. I think they are just all corn and corn syrup. Well, I guess it is frustrating. So like, how often do you get sick?
GETTING SICK STILL CC
L: Ohhh
M: From Cross contamination? Not from an accident. Not from like, oh I just ate something and the label says that it’s gluten. But like from cross contamination? How often do you get sick. Well, first of all just in general, how often are you getting sick and second of all from things that you think or things that are supposedly gluten free.
L: Honestly, sick overall in general. Recently a whole lot, with whatever viruses is going around always.
M: I mean like celiac contaminated.
CERTIFIED GF CONTAMINATED!!!!
L: Now that, I kind of have been avoiding going out unless it’s a safe space. But even the stuff I have form home that is labeled gluten free and certified gluten free probably once every two weeks or so.
M: Yep, that’s about me too.
L: Once a week if I eat a lot of processed foods.
M: Yeah that is me too. I mean I do brave the restaurants and stuff like that. And my boyfriend is not gluten free unless he is eating with me, but we have separate places. The good thing with him is that he is OCD and he goes through the house and changes every towel.
L: Awww that’s nice.
M: Yeah, he is like a clean freak. So that actually works out great for me, because I know he has scrubbed everything and I don’t ever have to worry about it.
L: Right.
M: But, um, I get sick about every week or two. Still, from certified gluten free foods,
L: Yep. Its definitely, I have not eaten anything. I have not cheated or anything. When I get sick it’s just because I have eaten whatever parts per million of it. I don’t even know what it is that’s in it. It still bothers you when I eat too much of it. It really is only 100% safe just to eat real food, like meat vegetables, fruit all of that and um. I worry a little but about rice sometime. Especially about minute rice. The minute rice, I think those even say that it may contain wheat and all of that kind of stuff. It has to be like raw bagged rice.
M: That’s all I use. I don’t use the minute stuff. I don’t buy anything that has that disclaimer on it.
L: Yeah, I don’t either now.
M: Except for some Costco stuff. Because all the Costco stuff have that disclaimer on it ever though several things from Costco are actually fine.
L: I guess just hat if they are in the same factory or something.
M: I guess just because they are such a huge corporation that they don’t want lawsuits. It doesn’t matter what you buy from Costco, all the Costco stuff is going to have that. You are taking a risk, but I found that a lot of the things are actually ok. But I only trust to give it a chance because of all of the social media threads that are on Costco stuff.
RETIREMENT HOMES
L: Think that if you were elderly and had just gotten diagnosed, they are not using social media. They are not, you know, googling everything from their phone. How in the world would they even know? Unless they…they are going to continue to get sick because they are just buying of the shelves trusting that its going to be gluten free.
M: They are going to get sick. I think about that all the time, having worked in retirement homes, you know. When I was at The Solana, we got an employee mean for lunch. And they cooked in the kitchen and they knew I was celiac. They were determined to try to not get me sick.
L: Hmmm.
M: And they were like “we are going to do this and that,” they would tell me all the things they were going to do to clean and I would still get so sick.
L: Yeah
M: And it’s like, I stopped eating there after getting sick so many times. And I felt bad because they were trying so hard. And they were trying so hard because they recognized that they need to be able to give safety to their residents.
L: Yeah, what if they have it, yeah.
M: Yeah, and they couldn’t fucking figure it out for me, so I know that they aren’t figuring it out for their residents. You know?
L: And the hospital
M: Oh I will not eat hospital food. People get sick from hospital food all the time. People get sick from the airplane foods too. Like I won’t order. And you know what else is not gluten free is Starbucks.
COFFEE
L: Oh my god. That was something that I immediately got sick from. I still tried to get my normal thing because I was, like I mean almond milk is fine and my espresso is fine, sugar free vanilla syrup is fine, but something there is not fine because they cross contaminate somehow.
M: It’s the coffee.
L: The coffee itself?
M: The coffee itself.
L: Jesus, what?
M: One of the sickest I ever got was, I already knew Starbucks wasn’t fine because I bought one of the canned Starbucks vanilla flavor in the can and I got super sick.
L: That’s crazy. I’ve only had iced green tea from there recently and I do well with that. And their only food item is those omelet bites. I’ve done ok with those any time I’ve had them.
M: Well, we were at the airport and they had Starbucks the black coffee. Right? And you do your milks and stuff yourself, right?
L: Yeah
M: I got sick from that. Black coffee with sugar packs and creamer packs, so it was the coffee.
L: You know what, that really makes me wonder about other coffees. Because that was one of the things that started this journey. At the beginning of October, I got real real sick, I gave up coffee entirely because it was just screwing my gut. Every time, not matter what. So I just tried not to have it at all and I went to green teas and all. And I love how green teas make me feel. But I wonder if its just some coffees in general. That is just shocking to me that it would have something in it, but I believe it because it just messes with my gut almost every time.
M: You never know.
L: I still haven’t been able to have expresso or anything after all of this. I have had a few cups of coffee at home but I have, for some reason dairy bothers me with the coffee, um but I can eat cheese and yogurt and stuff but I can’t have full on creamer anymore.
M: I use the almond creamer.
L: Yeah. I got to where I did that too because it doesn’t mess with me as much, but huh.
M: I use the Cuban expresso that’s in the yellow container.
L: Oh, yea Café Bustello?
M: Yeah Café Bustello, that’s what I use. It’s so good. That’s what I use, I have never had a problem with it. I use the Silk brand almond creamer with it. Now one of the other almond creamers I found it was not good, it bothered me. So it does depend. You have to kind of figure it out. I can use half and half with no problem. But I am also dairy sensitive. But it’s the same as you were saying. Certain cheese for me yogurt in only a small amount I’m okay, but for me too much yogurt will make my stomach hurt, so. I don’t know. But that’s like a remnant, I think its aa remnant having a messed up stomach from just dairy is difficult to digest you know?
L: That’s also another reason why drinking alcohol, I don’t do it as often because I feel like it messes with my gut too. But I feel it in a different way than gluten. Like it just doesn’t make my stomach feel good. Where as I just love THC stuff. I wish it was more readily accepted and stuff, because I feel good on it and I don’t feel hung over or anything like that.
M: And um, it helped me to be able to eat, you know? Well, I can’t think of anything else to add. We covered a lot of topics. It’s always so good to talk to you.
L: Yeah. You too. And its sucks that its under these circumstances but you have been such a wealth of knowledge and I feel like I have been through a lot of little emotional rollercoasters with it.
M: Yeah, it is hard. It is a mourning.
L: It almost feels selfish because its like, I’m deciding where my family goes to eat too. What if they just want to eat shit food and go to McDonalds. I literally can’t eat anything there. So, I feel bad that I’m not letting them eat whatever they want. But having McDonalds isn’t good for anyone.
M: There is stuff I do for stuff like that so I guess we should talk about that. I have a habit of – ok so, a couple of things…if we don’t know where we are going or if I think it’s going to be a situation where it’s only going to be the family that can eat...now with Presley and Kennedy, obviously its all of us, so it doesn’t matter, you know what I mean. That’s the only ones that are here now, but when it was everybody and I would just eat before.
L: Yeah
M: I would eat before we left and I wouldn’t eat so much that I would be full so that if we happened to find something for me then great but enough so that I wouldn’t be hungry.
L: That’s smart. I should try to do that sometimes.
POTLUCKS AND HOLIDAYS
M: And I do that for things like potlucks and Thanksgiving. I eat before and you can just say “I already ate before.” Like no one will see you as snobby. And I lot of times for holidays and everything, people know that you visit other folks and whatnot so they don’t really know. I find that that helps. Eat before, have some snacks in the car or whatever. But obviously for people that are close to you, you just have to lay down the law and be like “I will get really really sick.”
L: Um yeah.
RESTAURANTS
M: Um what always helps at restaurants, I always ask. I say, “listen, I have a really severe allergy.” Um some of them ask oh is it celiac? So some of them know. And I will say, I will get really realy sick, like I will go in the hospital I will be so sick. Um, can you change your gloves and then I start going through the list of things of safety precautions. And then I will ask them, do you think that you can accommodate that? And then I will say, if you can’t then its fine, I will just have a drink only. But is that something that you can accommodate. Because when you are asking it comes across as so much nicer than being like “listen this is what you have to do.”
L: That is such a good tip. I have not worded it like that. That would be very good for me to word it like that.
M: Yeah it helps. And then they check and so that helps too. Because then they kind of like, your server is like, can we accommodate that? Let me go find out. You know? Um and you are already giving them an out. Like if you can’t then its ok, I just can’t eat here. I just want to know if you think you can accommodate that. So that helps. And it does help having a person to be like, listen if I kiss her then I’m going to get her sick. Like, that’s how sensitive it is. That’s another way to explain it that then they like get it, how severe it is.
L: Yeah
M: I found that people that meet me or become close to me, or whatever, they…almost no one has any idea how sensitive we are until they are really around us all the time.
L: Yeah, definitely. Definitely, a majority of people only think it’s an allergy. They have no idea the actual internal damage it can do or other diseases and stuff that it can cause. I think that they know nothing about it.
M: Yeah
L: And it’s so frustrating. Oh one last thing that I kind of need advice on.
M: Yeah
TRAVEL
L: In two week, no not even two weeks…this Saturday…yeah the 7th and 8th. We are going to Gatlinburg.
M: Fun.
L: And we are staying in a resort that has restaurants inside of it and there’s no menus posted. I don’t even know if I can eat the food there which freaks me out. Um, you know, we are going to be in downtown Pigeon Forge, you know and I’m sure there are restaurants nearby, but they are going to cost an arm and a leg and there is no refrigerator or microwave in the room. I’m like, oh my God, I’m going to be panicking a little bit.
M: Ok so what you have to do is you have to go buy yourself a hot plate and a pot and bring that with you.
L: Oh my God, yeah.
M: That’s what you do. That’s what I do.
L: And just like heat up soup or something? Like gluten free cans of soup.
M: Yeah, bring stuff you can heat up. Definitely bring enough food so that you can eat only stuff you brought. For every road trip that I do, that’s what I do. I also bring a tea kettle that’s just for water. So I bring that and I bring my induction range if I’m not staying at an Airbnb that has stuff, you know. And I bring like literally a saucepan. You, know? That’s what I do.
L: I have tons of like protein bars and you know, I even have protein shakes that I kind of rely on now. And, yeah but that’s the only thing. I couldn’t think of anything past processed foods, um without a microwave or refrigerator. That is a good idea.
M: Don’t forget to bring dish soap.
L: Oh my God, yeah, I know.
M: (laughs) Bring the dish soap and like a sponge or whatever.
L: This is my first trip since all of this.
M: Yeah, bring all of that stuff. I also will freeze stuff and that way it won’t be defrosted until I need to eat it kind of.
L: Yeah
M: You can stick stuff in the cooler frozen and then a cooler of ice and things that are already frozen, that stuff will last for a bit. So if you are going just for the weekend, I rely a lot on breakfast sausage, frozen patties, you know. Um, stuff like that. Because you can kind of make it into anything. An
L: Ummmhmmm.
M: Like corn tortillas are good. Um, and then just bring like fruit and peanut butter. Like, apples and peanut butter so you can eat that. I literally bring my induction. I already have it because that’s what I use for the boat anyway. So I just bring my induction range, but go get yourself a little hot plate. I’ve also read about other people buying mini waffle makers an using that as a way to heat stuff. I haven’t tried that myself because I just bring the induction range and it doesn’t take up much space and stuff but yeah just get you a little hot plate and a saucepan. Make sure you have utensils and stuff. Bring paper plates and paper bowls and um, I usually bring regular forks and spoons, because who is going to use plastic stuff? That’s like impossible if you are trying to cut something.
L: Oh yeah
M: Just bring your dish soap and um, that’s what I do. Something else you can find that’s really good is, um, Trader Joe’s has it and some of the other grocery stores have it. There is this Indian food, its vegetarian because it’s Indian, and is like chickpeas and stuff like that, and it’s in a pouch. Like kind of like one of the tuna pouches, but its like Indian food with all the sauce and everything. And you just heat them up and um, they are really good. So, I’ve used those a lot too on trips if you like Indian food.
L: Oh yeah, definitely.
M: They have a bunch of different ones. The spinach one, the paleek paneer is not that great but all the other ones are really good. So, I’ve found them at Trader Joe’s and other places have them too. I’m sure Whole Foods has it, but they are literally in a pack.
L: I love Trader Joe’s. I really do. Um, them and Aldi. Which I think they are kind of related, the companies.
M: Yeah, they are related. I love Aldi. I don’t have a Trader Joe’s near me so I don’t go to it, but it is awesome. But you know, I think that some of their, for me some of their protein bars have been slightly contaminated. Not much, not all of them. But a couple of them, I was like uhhhhh. I mostly bought them for Kennedy and he is not that sensitive to the cross contamination and that sort of stuff. He is one of those ones. He is definitely symptomatic. If he gets actually glutened, he will definitely get sick but he isn’t as sensitive to the minute amount that I am. I ate a bunch of them and like two of the different types I was like…hmmmm, I didn’t feel that great after. So, you know.
L: Hmmm
M: Yeah, but I think it’s just a factory thing.
L: I might call this resort as well and see if there’s like a cafeteria where I could use the microwave or something.
M: Oh yeah, that’s true.
L: Because when you said about the Indian food, I have some like tiki marsala and other things frozen that are tv dinners that are gluten free from Kroger. They have a big variety, I forget the brand name of it but saffron something. They are some tv dinner ones that I use pretty regularly for work lunches. And I wonder if I could bring some of those in a cooler and just microwave those little things.
M: Yeah. There you go. I mean honestly, even those you could toss in the saucepan and heat them up that way if you can’t find a microwave.
L: Very true. Yeah. Oh, well thank you so much. I hope that was a help at all.
M: Oh it’s definitely a help.
L: So I think with proper documentation, if it ever gets bad, I think its ADA accepted. It’s considered a disability, right?
M: It is ADA accepted and actually, it is very difficult to um…well there are some things that are good and some things that are bad about that. It’s kind of hard. It’s just a slippery slope, I guess. Um, but for the kids, I always go and get the nurse to sign off that they are celiac. I bring it to the school. They try to accommodate for like the lunch and stuff. But you know, my kid is old enough to advocate for himself.
L: That’s good.
M: But he’s always been really good about that. What’s funny is that when he was really little, if we were at a party and someone would try to give him like a cookie or something, he would come to me and tell on them. (Laughs)
L: (Laughs) I love it.
M: It was so cute. Um, yeah so cute. Um, ok so what you can do is you can claim it as a deduction on your taxes for the food, but it’s the difference of the food. So what you have to do is that you have to keep your receipts and keep a documentation, I guess a photo of the price of the equivalent with gluten.
L: Oh
M: And then, it’s the difference of that, that you can deduct.
L: Oh nice, ok.
M: So if regular bread is $2 and ours is $10 then you can deduct
L: $8
M: Yep. You have to keep it documented that way, but if you do that and you do all of that extra work, then you can deduct that. Sounds like an app I need to build.
L: Yeah, you should.
M: I should. Well, I’m going to let you go, but let me know how that trip goes.
L: Thank you, I will and thank you for always being one text away. That really helps ease my mind if I have random questions. I so appreciate that. Well, it was good talking to you and let me know if you need anything else.
M: Oh thank you!
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INTERVIEW WITH LARSON: 2/17/25 3:49pm Eastern
INTERVIEW WAS PROMPTED AS A RESPONSE TO THE FOLLOWING FACEBOOK POST
M: This chapter that I am working on that I’m going to use your interview for is about how celiac affects people’s life in ways that go beyond eating a strict gluten free diet or what we have to buy at the store or the numerous questions we have to ask any time we go anywhere to eat. All of those other things is not really what this chapter is about. For this, it’s more about how our lives in every other way can be affected by celiac disease.
L: Right right.
M: The thing that really hit home for me is that you in your mind before celiac, and I definitely want you to expand in this had an idea of what you wanted your life to look like. Being an engineer, going to college, and being successful. And you know, of course between you and I, I know your family and I feel like you envisioned yourself as being way more successful than your parents ever were.
L: Yeah
M: And I don’t mean that as an offensive thing to your parents, but I just see, that in my mind that’s what I see.
L: Yeah, that is exactly the thought process was that I did not want to struggle like that all my life. And that I wanted to find something better that I was passionate about, you know?
M: Yeah absolutely. And what made you pick engineering?
L: Um, I have a high propensity for math and science, um very much unlike the rest of my family who are all artistic. You know, my dad was a writer and an English teacher. My mom was a photographer, my sister also did art and also made her own music so then there is me with all the math and science. Um, but when I was going to the college preparatory school, I took pre-ACT just like a career aptitude test and I scored so high on my math and science my freshman year that I was invited to a youth conference in Washington DC for aspiring engineers.
M: Oh wow. What’s the name of it?
L: It’s been so long I don’t remember the name of the program.
M: That ok. So tell me about your experience and did you go to the conference?
L: I did not end up going to the conference, the type of engineering that I wanted to do was more medical and robotic rather than military work and that is what this conference was for. It was for working in the military as an engineer.
M: Gotcha. Did you do any other clubs or any other programs that were along the line of your goals for engineering?
L: Um, I did a few. I frequently entered Lego building competitions. Specifically ones that required you to have a lot of play functions built into them which requires a lot of basic structural engineering, working with gears, working with motors sometimes. Um, I worked with small scale robotics kids for fun and I had a journal that I would write down design ideas for future projects once I could go for more freelance work.
M: That’s really cool. What are some of your favorites?
L: Of like the ideas I came up with?
M: Yeah.
L: So a lot of them were small scale things. The biggest one that I spent the most work on was an idea for a powered exoskeleton. And basically the way it would work is it would involve a basic algorithm to map out the way the musculoskeletal system works in humans so that you would wear skin tight suit over it and it would sense where the muscle contraction was about to start before you made the action so that the delay in response to movement in the suit would be almost non-existent because its not moving the hand when the hand moves, its moving the hand when it feels your wrist is starting to curl in. Do you see what I mean?
M: Yeah yeah. That pre-movement part of your body is located in the frontal cortex, um in your frontal lobe there is a section of it that, I can’t remember what the name of the movement or action is called but my cousin that had a brain tumor on that part of his brain – I learned about it at that point. But here is actually a part of your brain that does that pre-movement function. Its like an anticipatory part that then sends like chemicals to enable the movement.
L: I actually didn’t know that. Yeah this was a project that I was working on like 15 years ago so technology has made huge advancements since.
M: That’s cool That’s a really cool idea. I love it. That’s awesome. So then alright that what age were you when you were doing all of that and you had such high hopes for engineering and everything.
L: It was when I was 14 to 15 so about 15 years ago for me.
M: When did you learn about your Type 1 diabetes? That was first, is that right?
L: Yeah, that was when I was 11 years old. Um, ironically the day before Halloween was when I was diagnosed.
M: Oh my gosh. It just had to be the day before (chuckle)
L: I’m actually glad because if I was diabetic and not on insulin, I probably would have died.
M: yeah you probably would have. Wow. Alright, so then…you got diagnosed with the Type 1. How long after that did you feel like recovered from and got used to being Type 1? Like you obviously felt better because you had a lot of aspirations at 14 and 15 so like how long was your kind of settling into your new lifestyle and recovery from symptoms from Type 1.
L: Um, It was pretty smooth, I would say about a year or two that it got really settled. Like I had my blood sugars under control. I always carried supplies for my blood sugar was low or had insulin on me if it went to high. I checked it very often. Um, because when I got diagnosed I had the dieticians and endocrinologists teach me everything directly because they were trying to teach my parents and I was like I’m 11 years old, I’ve old enough to be able to manage this and I’m going to have to learn anyway. Just go ahead and teach me.
M: Yeah. Absolutely.
L: So it made the process a lot smoother because of that
M: That’s good. That’s really good. So then moving to celiac. When did you start noticing symptoms of celiac?
L: Um, it started when I was about 13, about to be 14. I noticed that I was just getting randomly bloated more often. Having to use the bathroom a little bit longer. Having just gas in general. Like burping a lot, farting a lot. Stuff like that.
M: Yeah
L: Um, that went on for about 2 years before I was officially diagnosed. I was diagnosed sometime in the beginning of ahhhhh 2010? Yeah 2010.
M: And they did a biopsy diagnosis for you?
L: Yeah. Um my doctor already suspected it because I already had the Type 1 diabetes and those tend to domino into each other but um they did the biopsy and it showed positive.
M: Alright, and then. Ok, so obviously you know it wasn’t just like get diagnosed, go gluten free and then you are like fine. So tell me about your experience post diagnosis where you just like sick all the time and also like how did that affect your life. Your social interactions, school. I mean, I know already your story but I just wanted to like recap it while I have you for the interview.
L: Right right. So um, like I said, I started developing symptoms when I was 13. I didn’t get diagnosed until I was 15. What happened was that I had already contracted the celiac at 13 and it went undiagnosed for 2 years.
M: Yeah
L: So um, by the time that I got to that point it was because everything was making me violently ill and um come to find out all the villi in my small intestines had been completely flattened and destroyed form the years of undiagnosed celiac. Um, I spent about a month in the hospital being fed through IV because I couldn’t digest anything so when I got out of the hospital they put me on the ulcerative colitis diet. The high scale one where I could eat bananas, rice, gluten free toast, applesauce and if I was having a good day I could have chicken and fish with some salt on it. I lived that way for about 9 months before I could start reintroducing different spices and stuff into my diet and that was during the time when I was home bound. I mean my digestive system was completely destroyed and it was growing itself back. Um, my doctor actually said if that situation had happened even two years later my body would likely not have recovered from being in that state.
M: Right
L: Which is why I believe now a days I still have so many problems even though I stick to a very strict diet and watch what I put into my body and how much I put into my body from all that damage that I may or may not have recovered from. Um, I was completely homebound. I couldn’t leave the house. I couldn’t leave the bathroom for more than four to six hours. Just to sleep and then have to go right back in. Um, my parents would have to bring meals to me when I was on the toilet and the extent of my social interaction was sitting on my computer on a TV tray in front of the toilet just going on forums and fansites and stuff like that and making online friends.
M: Um, which like, thank God for that. Really, I mean that is something that…like I have thought about that a lot like obviously my boys have celiac and um they were both doing online school. Now one of them is doing online school and the other one started to do in person school, the little boys…the older boys don’t have it but anyway. Um, I always talk to them about the value of social interactions online because we are kind of in a phase of society where society isn’t really use to that, of people having mostly online friends and you still have a lot of people who are like “oh no screen time is bad” and you know “don’t let your kids be online al the time” but I think for people that have chronic illness…for people that are homebound, and even for the elderly or for people that are living in remote places like in bumfuck country USA, that like online forums and friends where you find each other with common interests and stuff are super valuable. So did you want to expand on how you feel about having hat as at least one way to socially interact?
L: I Definitely agree because that was a thought had was that what if that happened like in the 70s and didn’t have that option….I would have been completely isolated. I wouldn’t have had any way to talk to people other than talking on the phone but even then that would have been humiliating because I was you know blowing my ass out.
M: (Laugh) Yeah
L: So It helped tremendously because I will say, isolation induced psychosis is a very real thing. I heard voices. I had like imaginary friends and stuff. I knew like they weren’t real but the life was boring enough that it was making me concerned because I spent all of my time alone in a bathroom.
M: Right
L: Like I was actually diagnosed with PTSD from the experience because that level of isolation with someone that young. I was 15, those were in the middle of my formative years.
M: Yeah
L: …And I was spending it completely isolated and online which was probably why to this day I still hold such a strong online presence, because it’s what I know better. It’s what brings me comfort.
M: Yeah
L: Especially on the days like you said where I still get sick and then like its like I want to talk with someone. I don’t want to be alone but I can’t go anywhere.
M: Yeah right
L: So no I think that especially for…not to mention like as an added note not only for people with chronic illnesses physically but mentally I know like um, making friends online helps tremendously for them because they can use like technology like speech to text tools or like um, text to speech tools if you are blind you know. If you have um, you can download different fonts that help with people that have – the word for when you have a hard time reading…I forget
M: Oh like dyslexia and stuff like that?
L: Dyslexia yeah dyslexia. There are a lot of aid tools now that would make interacting for people so much easier than it would be decades ago when it would only be able to talk in person.
M: Yeah for sure. Whenever I did my PhD a lot of what I did was disability studies so you know all of this falls in line with like what you said, just making social interactions more accessible.
L: Right yeah. I mean humans are a social species. We thrive with other people. We are not meant to sit in isolation especially dealing with whatever hardships or illnesses or what have you that you have to deal with.
M: Yeah absolutely.
L: I couldn’t imagine what I would do without having the support of my online friends. Without them, going thought all that, I surely would have lost my mind.
M: Oh yeah. Totally. I mean absolutely anyone would. Like you said, people are not meant to be alone. Um, and speaking of that celiac itself is an isolating disease in a lot of ways.
L: Yes, Yes.
M: How would you say that that’s true?
L: Um, so the thing that…there are two factors that come in with celiac flare-ups. One is you know you have to spend extended time in the bathroom. Like, upwards of…I’ve had flare ups that have had me in there for three to four hours
M: Yeah
L: Even with as much as I’ve recovered and it’s like what am I going to do in the bathroom for three to four hours other than have a phone or have a laptop.
M: Totally
L: Um and then the second is and this is the thing that not enough people talk about is the pain that comes with it that people do not realize the amount of pain that Celiacs go through when they are having a flare up.
M: Oh My gosh, absolutely.
L: I read an article um once that said that they interviewed I think it said a thousand people with celiac and they had them rate their pain on like the worst flare ups they had and on average they said that the pain they went through on a full scale celiac flare up was the equivalent of like breaking your arm in half
M: Yep. I believe it.
L: Which leads to fatigue which leads to brain fog which leads to…I equate a lot to fibromyalgia flare-ups. They seem to manifest in a lot of similar ways.
M: Yeah, absolutely. Definitely. Um, I have bene lucky that most of my…I get sick all the time but mildly so. I think that I am just…our food system is such crap…and our um…that there is just a tiny bit of gluten in almost everything even if we buy certified gluten free products. And they have actually verified that with scientific studies. They have studied groups of Celiacs that um are eating 100% gluten free everything. Absolutely everything. Never taking chances and they have um you know like done stool samples. And their stool samples like 100% of them have gluten in them.
L: Oh My God.
M: Yeah 100% . I’ll have to find that article for you and send it to you but this basically is a published article I think it was on the NIH website and um it basically it says that it is literally impossible for um people to be 100% gluten free at least in the United States. Like everything gluten free that we eat isn’t really 100% gluten free.
L: Yeah
M: And I…that affects me so um, I get sick all the time but its not full scale sick its just lie a little bit sick, you know? And
L: Well like…sorry go ahead
M: No, I was just going to say that’s me basically every week, I’ll be like a little off. Or like if I go eat at a restaurant even if they are super careful, I might happen. And I am careful. I don’t even eat anything that is processed in a facility with wheat or any of that stuff and it will still happen to me all the time. But um the last time that I got totally contaminated like full blown flare-up was um like really bad…like I have had some kind of bad instances but the last really really bad time was probably about four years ago where I was just like passing out, throwing up, terrible diarrhea, terrible pain like unbearable pain and like I said, I just kept passing out over and over again. And that was when I was with my ex (name removed) and it was so bad that he like kept checking my pulse and he was real close to just taking me to the hospital and like you and I know that doesn’t do shit. They don’t really do much.
L: Yeah
M: And he had to call his mom the next day because he was traumatized watching me and trying to help me and not being able to help me and just the amount of pain and sickness that I was going through to see it traumatized him and as much as an asshole as that dude is he literally was traumatized by that. That’s how bad it was. It was that bad.
L: Yeah
M: So I mean people just don’t understand that, you know, um until they are like really close to one of us and they see it for themselves, you know.
L: Yeah absolutely. I remember my parents. It broke their hearts every time they had to bring a meal in to me. I couldn’t even go out to like join them for supper. It broke my heart too so.
M: Yeah. And that’s another thing. Think of all of the family meals that you were excluded from because of that reason.
L: Yeah at least nine months that went on for. It was probably more like two years to be perfectly honest. I wasn’t until I was about almost 18 where I was able to leave the house for extended periods of time. Like I could go out in the morning and come home in the evening and be okay, like that.
M: Right, yeah. How often do you get sick now? And I guess if we were going to rate it. I guess we should range it small, medium, large (laughs). You know what I mean, because I know that’s how it is for me so how often do you get small scale sick?
L: That is kind of like a constant. And its not like my stomach is irregular its just that I have this constant pressure and residual pain like specifically on the sides of my abdomen and my ribs from just…cuz I also have gastroparesis so going to the bathroom normally is still king of a struggle.
M: Right
L: So that kind of is always there. Um, I haven’t really had a large scale flare-up in like a few years. Um, but the small scare flare-ups I would say I get one maybe once a month.
M: Okay
L: Enough to where if I ‘m at work I probably have to go home early just cuz either that or I’m going to be running to the bathroom 20 times over the shift. Like I’m doing this (leaving work) for your sake.
M: Yeah totally. So let’s talk about the ways in which…ok so we kind of focused on the social stuff. Do you feel like having celiac and the fact that you do get small scale flare ups, obviously it affects work. You might have to leave work. Um, I know just from knowing you that it has affected your employment so let’s get into that.
L: Yes, um I will say that a big thing about doing this interview and working on this project is that people need to be more informed because most of the employers that fired me wrongfully had no idea about celiac. I had one employer that said that I was in the bathroom as an excuse to avoid a rush. I had another person…I even told him before I went in, hey I’m having problems today but if you really need me to pick up this shift I will come in and he said yes and then I got sick and he told me to go home. There was a time that I was working at…that was at like a local daiquiri stand in Louisiana. There was another time when I was working at home depot and it was the same thing except you know that bothered me even more because it was corporate. They didn’t listen.
M: Right
L: Like (they asked) do you have any disabilities? And I said yes I have diabetes and celiac disease. When I started there, I started as a temp working customer service and I was thriving. I was doing great on the desk. Everyone loved me over there and I was able to handle my sickness really well because I wasn’t like physically exerting myself that much.
M: Right
L: Um, but then the head management moved me on to moved me to cleaning up the lot which at home depot is the giant metal carts they use for wood and all that. I went to go have my lunch break, I ate a completely certified gluten free can of soup. I ate that, immediately went and threw up. Went to the manager and was like, hey its like 100 degrees outside, I only have a few hours on my shift. I just threw up my lunch, can I go home early and instead of telling me yes or no, they just fired me on the spot, but the problem was that I was living in a right to work state so unless I had recordings of them saying those things directly to me they could just make up anything and that’s why they fired me so I wasn’t able to take any legal action even though I absolutely had the right to and it’s just discrimination. They did not understand that when you get its it’s like “oh my tummy hurts” you may very well have to go to the hospital if its just to get some intravenous zofram.
M: Yeah right totally. Especially with diabetes.
L: Oh right and I will have to say that I have had an easier time with the diabetes just because that is a more understood illness.
M: Right
L: When I say, I have a little blood sugar to my work, everyone knows to say “go sit down” drink some soda or whatever, let it come back up. But when I say hey I might be in the bathroom for an extended period of time. Like there were jobs when I would have to deliberately leave my phone out on the break table to show my management that I wasn’t playing on my phone in the bathroom.
M: Right. And you know that Celiac is the most common autoimmune disease, more common that Type 1 diabetes and also more common than a nut allergy which everyone is like so on top of. Um, but is actually the lest funded than like all of the diseases that there are.
L: Oh My God, that’s awful
M: I know
L: I did not know that.
M: Yeah its crazy. It’s crazy and the way that it’s classified is crazy like as far as funding is concerned. It’s thrown in with the endocrinological diseases but it should be and I don’t know it’s just a total shit show as far as funding is concerned. And like by the least funded we are not talking like say cancer is one and diabetes is two and heart disease is three and it’s like ten or something it’s like the amount of funding is nothing, it’s nothing. Like say of diabetes get like I don’t know 50 million, like celiac disease gets like 100 thousand. The discrepancy is that far. I mean, I’m making up number but just as an example of how bad the discrepancy is. It’s just insane.
L: Well, with how well informed you are, I totally believe that. That’s absolutely crazy.
M: It is crazy. It’s totally crazy. All right. So finding jobs. So whenever you look for a job, do you disclose? Obviously you have to disclose everything because not disclosing is just going to cause problems right?
L: Yeah. Um, I usually have to do it at the end of an interview. I find that that’s the best and basically I wait until they say we are ready to hire you on and I say hold on, you need to know this about me because if I bring it up in the initial interview chances are, I’m not going to get that job. It doesn’t matter how well qualified I am for it.
M: Yeah they have to make an offer otherwise they are discriminating. You know, they can’t take an offer away.
L: So I try to stay as well informed but also like I hate that that is the extent that I have to go to just to get a fair job like anyone else. Especially like with the fast food jobs that I have had to work because I could not find anyone else to employ me. That’s absolutely humiliating getting yelled at like by a McDonalds manager that like ten years younger than you that you were in the bathroom for too long.
M: Yeah, right. Totally.
L: Like I just…
M: It sucks
L: It impacts in so many ways.
M: Yeah totally. And um, what’s the longest that you have held a job for?
L: The longest I held a job was three years and I constantly had to fight for that job. I had managers left and right. I had managers constantly trying to fire me and I constantly had to threaten them with “I will absolutely sue you for medical discrimination. I’ve got more than enough documentation on file. I am a good worker. I have people here, other managers that can attest to how good of a worker I am. Like, you have no good cause to get rid of me. Like it would have to obviously be medical discrimination for you to get rid of me at this point.”
M: Right
L: Yeha it was a constant fight and technically I was at a job that held over three different locations just like a year and a half at one a year at another, six months at another but with that company. Um yeah other than the one that I worked for the shortest amount of time for it was a constant battle. I remember one time I almost got into a legal battle with my manager, because we – uhhh – the owner switched to this ridiculous trash system. We went through so much trash at this job that we had to use a compactor and then you load it onto a forklift type thing and the way you dispose of it is you wench it up until it is all the way at the top and so all the weight of it is at the top of this like palate pack basically and then you are supposed to push it forward and dump it into the dumpster.
M: Yeah
L: One time, obviously this is a completely bull shit system and leaves so much room for error.
M: Yeah
L: I was doing that the thing slipped out from under the bag because the weight was so much.
M: Oh my God
L: And it hit me and I was literally covered head to toe in flour.
M: Ohhhhh my God.
L: And I went to my manager and I’m like I’m going to the hospital right now, never have me do this again.
M: Wow. What happened?
L: Um, obviously I got super sick. Um, I had a flare-up that lasted three days and I got time off excuse for all three of those days but yeah. I was in constant flare-up pain like you described with your experience four years ago that lasted over three whole days. Just because I breathed in all of that flour all at once. It was all over me.
M: Yeah people don’t realize that either, how certain jobs are just harder for us to have. I worked at an Italian restaurant and I did everything that I possibly could not to get sick from that place. Obviously, I never ate anything that was there. I didn’t use their plates or their forks or their glasses. I didn’t use anything of theirs. I brought everything from home and I used gloves all the time. I washed my hands probably a hundred times a shift. And they had a pair of tongs so that I could grab like the bread like for the tables. Just for me, like I was the only one allowed to touch the those thongs right?
L: Right.
M: They did their best but I still was sick after leaving that place every time. And I read that actually that as far as cooking pasta is concerned that gluten actually sticks to the water vapors
L: Yes
M: when so like that what was going on with that. There was no way for me to escape getting contaminated just being there in the back of the restaurant when they had ten fucking vats of gluten pasta and vapor flying all around the place. They use to make us come in to clean like once a month and um, like the dining room area and just that and like the chairs and the walls and like everything had little bits of just like residue all over it just from the vapors. And you know, I left that job and I stopped getting sick and it was like okay, I can’t work at a place like that. I can’t do it, I’m gonna get sick. You know?
L: I’m really thankful for my current job for being as accommodating as it is. Um, I’m a fry cook there which is really dangerous for a Celiac but um, I always wear a face mask and specifically I only handle flour when I’m breading things so its not getting kicked up into the air because I’m not throwing it down. I’m just rolling it into the flour. And I’m wearing gloves while I’m doing it. Anything else that has to do with flour, someone will do for me. Like if I am running low on flour for the bowl, and I need more, someone else will come refill it for me so that I don’t have to risk opening up the vat where We keep all the flour. If that needs to be refilled, someone else will do it like and I get sick occasionally but I noticed it has more to so with when I’m eating outside of work more than things happening because of work.
M: That’s good. That’s really good. That’s really great. So let’s talk about how celiac has affected…ok so we talked about work. We have talked about social stuff when you were a kids. What about social stuff now as an adult.
L: Um, usually the same thing as work. I have to bring it up very early in friendships and ahh, that I have celiac disease and that sometimes I might have to cancel. Sometimes I might be super late. Please don’t take offense to it. Please don’t take it personally. I just sometime my body will crap out on me figuratively and literally. It could be the diabetes. It could be the celiac. It could be the gastroparesis. Like they just have to understand that I sometimes might have to bail out last minute and usually I make up for it by chatting online and showing I did want to spend time with you.
M: Now, have a lot of your friends become advocates by being educated by you?
L: Yes actually. Because and that’s why I believe it’s so important that people should be vocal about their experiences with their chronic illnesses because that does help people. Like I actually, a friend of mine today sent me a celiac meme because I previously showed them a celiac meme and I thought it was just going to be something like “ahhh bread, oh no” but no it was actually a mem showing um what happens in the digestive system of someone with celiac. And its like, they now learned how celiac works on a microscopic level, like on a microbionic level because they knew me and they were just like “Oh Larson…I have celiac”
M: Yep. That’s so true
L: Um, so yeah, no it has helped a lot and I have definitely seen a bit of a ripple effect.
M: I feel like um, I feel like now. I mean, when you got diagnosed, around the time you got diagnosed that’s when um you know gluten free products were trending as a fad diet.
L: Right
M: And um, so like 2010 era and I feel like a lot of Celiacs were harmed so much by that because you know people just thought of it like a fucking joke and I think that it has gotten a lot better now and I think part of it is that enough people are open about their celiac and enough people have heard of it and actually know what it is and understand that it is really serious. But a part of it is also the fact that the fad diet thing has kind of faded and people aren’t really into it like a fad. If anything there are non-celiacs that are gluten free but they genuinely feel like they have a gluten sensitivity. And that they feel much better when they eat gluten free so um, but um, I know that around that time 2010, 2012, because I got diagnosed in 2005 back when no one knew what it was at all.
L: Yeah
M: So there was about 5 or 6 years where no one even had any idea what it was at all. And then the fad sort of started and I feel like I got blown off by a lot of people because they just thought that I was some white bitch fad dieter girl. You know?
L: Its funny, um, It’s funny because the exact same thing happened with diabetes. All of the artificial sweeteners as we know it and beyond only started developing because of Atkins diet not because of diabetics.
M: Yeah
L: So then diabetics are this sugar free stuff ort low carb stuff and then they are getting the same treatment as Celiacs did when celiac or gluten free food was trending that way so it’s just a damaging thing across the board that people need to not be ignorant and keep an open mind that what if they are full of shit. Like maybe worse case scenario you put in a little extra effort just an annoying white bitch or whatever.
M: (Laughs) Yeah right.
L: Best case scenario, you kept them from going to the hospital.
M: Yeah right. People need to learn more compassion.
L: Yeah
M: For sure. Um have you had any instances like specific stories where someone has responded to you with like kind of blowing you off about eating gluten free?
L: Um, not necessarily. I will say that I am incredibly blessed in that everyone that I met who knows about my celiac has been pretty understanding. There are a few people I have had to be more stern about it with than others mostly like they will joke a little too much about me farting a lot. It’s like, hey this is an actual thing, please stop.
M: Yeah
L: There is a difference when I make a joke about it and when you make a joke about it.
M: Yeah
L: Um, but that is the extent of it. Otherwise, people have been really understanding and I try my best to be patient with people and teach them because I believe that’s how you’re going to get the best amount of change. And not by fighting people over it by taking it personally. By understanding that they just don’t understand and that you could be the one who enlightens them.
M: Yeah totally. All right let’s go back to how like you envisioned yourself as being an engineer at this point. Your post was very very impactful, um and emotional. Because it definitely highlighted a sense of loss that you feel.
L: Yeah
M: So I want to talk about that.
L: Not to be extreme but it really feels like I’m mourning a past self of mine that couldn’t have been. It really felt like when I was diagnosed with celiac and I was spending all that time on the toilet and away from my friends and away from school that I had effectively died. Like, I was not a part of society. I was alone in a bathroom just having problems, but then a thought dawned on me that um I may feel like I have died but I’m still alive which led me to wonder maybe I could find an additional path in my life. I really do feel proud of where I’ve gotten in life. Like there were aspects where I would have preferred to be better sure. Like financially I would like to be more secure you know. I’d like to be doing an actual career than just a side job, part time job but um, you know I still very much mourn that past self because it really was just a single thing that happened that diverted everything that lead to that domino effect that completely changed my life. Because like every bit of it. Like what if my parents didn’t spend that money like I could have gone to college at a later date when I was more…when I wasn’t as sick. What if I had gone, what if I had tried harder to try and get my school work done but that is unfair because I was dying so.
M: Yeah
L: Um, but it just and just like the celiac hitting me so hard what if I caught onto it sooner or wasn’t that sick. Like just so many what ifs that you know could be one thing if you are spending what ifs like what if things ended up with that girl but when it changes your life so starkly and so dramatically yeah it really does feel like a spiritual death, an ego death.
M: Yeah. Yeah I mean I really relate because when I got contaminated from my medicine...you know, I mean again with the whole ahh family trauma and stuff like that, I already don’t really have like parents and stuff like that. But I was actually at the time still in contact with them, which maybe I probably shouldn’t have been to be honest (laugh)
L: (Laugh) Yeah
M: But that’s an aside. Yeah, um, when I got that sick and ended up in the hospital and I had two things…two crazy things happen. Well, a few crazy things that happened. One of them being tons of people were so helpful and went out of their way to help. People that I didn’t even know would do stuff like what they did for me and they did. And that was amazing, you know?
L: Yeah
M: Um, and then, I had people that I thought were friends of mine and they totally fucking sucked. And, you know were like assholes acting like I was crazy like I was overblowing everything. Like, I almost died during that time because I was taking in gluten every single day. It was in my thyroid medicine. I didn’t know.
L: Yeah
M: But I was so sick. I lost like 30lbs and you know I was so sick. And I 100% believe If I hadn’t figured out what was going on, I definitely would have died. I was on my way. Everything was fucked up. And..
L: Oh yeah, no. I can personally vouch cuz when I was firs diagnosed and sick and constantly being exposed to gluten, I went down to 85lbs and I’m 5’9.” When I say I almost died, I mean I almost died so when you say you almost died, I know its not hyperbole. I mean like you almost start toward death because when you damage the villi with gluten obviously you can’t absorb nutrients. Like, that’s a big then I like to teach people about celiac.
M: Yep, um, yeah so. People just have a really hard time understanding that because, you know they just see someone that, I’ll have to say that I can be bad about hiding my illness. I’m the girl that will do anything not to tell people that I’m sick right now. You know?
L: Yeah
M: And I’m trying to be better about that, like as you know there really is no winning. Because when you tell people then they react and when you don’t tell people they react, you know.
L: UmmHmm
M: And that’s a big problem but um, you know, I will go around and just like hide when I’m sick and then when I feel like okay enough to muster up being around people I act like nothing is going on. You know, and so that’s just like how I have responded to it. So during that time, that happened. So people where just like so surprised and there was just like a whole set of people that just couldn’t believe it including like most of my family. And um, you know so I went through all of that stuff and I survived it. I got better, um the drug company figured out that gluten was in the medicine, because a bunch of Celiacs were getting sick and they like did like ahh, I don’t know they put out a statement and stuff saying that they had found it and where they had found it and all that sort of stuff which by the way of course you can’t find that statement now anymore. They like buried it right? (Laugh)
L: Right
M: But It was there. That’s how I found out where I was getting sick from because when I was in the hospital they did the biopsy and they were like “oh yeah, you are getting gluten from somewhere” and I’m like, “I don’t know where” and it was still a few months later that I had found that thread.
L: Yeah
M: And that’s how I found out. It wasn’t even through a doctor or anything. But then after all of that, it’s like I lived and everything about my life changed. It’s like I lived, like I’m still here but my life died, because um, I moved to a completely different place. My marriage with the boys’ dad fell apart. Which it was falling apart for different reasons for a couple of years before that anyway, but it was done. Um, I stopped talking to basically all of my family except for a handful of cousins who have been really supportive of me. But basically everyone that wasn’t supportive of me, I stopped talking to. When I was in the hospital here in Florida, I have a huge family here in Florida. They have always been here ever since I was a little kid and I was in the hospital for almost two full weeks. Not one person came to see me. Not one.
L: Oh wow
M: Yeah, Brian was still in Tennessee trying to move everyone down to here because we were living in Memphis. In Memphis, I had gone to the doctor and they were like, you have got to go somewhere that’s not Memphis because in Memphis, no one here is going to help you. Like all of the appointments were like a year out and they were like if you don’t get help now, you are just going to die. So I was like all right, I’ll go to Florida. At the time we had gotten the coloring book contract and we didn’t have to work for anybody. We had an advance. Two advances, one for a coloring book and one for a text book. So, like we could live wherever we wanted. So it was weird because I went through like my own Covid type experience way before Covid. (Laugh)
L: Right, yeah.
M: Yeah. Um because it was 2016. So like with the exception of the fact that no one visited me in the hospital. I was isolated but that was because, by their choice, not because I wasn’t able to see people. I could see people. People could come visit me, but they didn’t.
L: Right
M: And I thought I was dying. And the nurses thought I was dying. They actually…I was so sick that the nurses all thought that I had type, like a level four blood cancer.
L: Oh wow
M: Yeah that’s because blood cancers are really difficult to diagnose and its not until they reach stage four that you are dying and that is when you find out that you have a blood cancer, because you are pretty much asymptomatic before that. Right?
L: Yeah
M: And so that’s what they thought. They just thought that I had a blood cancer, and that I was dying and that I would never leave the hospital. That’s what the nurses thought. So, um, and I thought I was dying. I was like, I’m going to die in the hospital. That was part of my reason for coming to Florida because I was like well if I’m going to die, I want to die by the beach at least, you know?
L: Yeah
M: And um, yeah, so but the fact that like no body visited me in the hospital at all was so painful and afterwards I kind of gave them a year with like peripheral relationship with all of them to see if they would you know, feel bad about any of it or whatever. And none of that happened, so I just cut off all my ties with every fucking one of them. So it’s like my whole life experienced its own death. You know (laughs). That’s how I feel about it.
L: Yeah, no it actually really reassures me to know that you understand that aspect because I’ve met tons of people with celiac but not often do you meet someone with celiac where it has impacted their life on that, like an extended level.
M: Yeah. So do you want to expand on how it has impacted your life on that level?
L: Um, in a weird way it has given me a sense of confidence that um, it’s like I don’t just know that I’m strong and resilient, I have this experience to prove that I’m strong and resilient. Um…
M: So true
L: Um, go ahead…
M: I was just saying that that is so true.
L: Yeah, um I’m sorry I lost my train of thought. We were talking about, um
M: Um the kind of like more existential way that like celiac has affected your life.
L: Oh yeah. Um, so in a way it has made me feel stronger. But in a lot of ways too it does make me feel weaker. Like there are time when I get frustrated and angry because it’s like why do I have to put in twice the effort to live the same life as someone just lives without any discomfort, without any constant pain, without like…but then it kind of like goes back and forth because then it’s like well I’m going through all that pain and still keeping up so that kind of makes me feel like even more of a badass.
M: Which you are
L: Thank you. Thank you.
M: You’re welcome
L: I’m trying. I feel like it’s its…I saw a meme that kind of best encapsulates my feelings on it.
M: Yeah
L: Its living with chronic illness just be like “It’s fine, it’s fine, it’s fine, it’s fine…oh my God, I hate everything…I hate my body…It’s fine”
M: Laughs
L: “It’s fine, It’s fine”
M: That is so exactly right.
L: Yeah
M: If you find that, you have to send it to me.
L: I’ll have to find it but yeah that’s kind of what happened with that post the other day. Like I did...I was going through a lot of anger with my mom but um a lot of it was just lamenting over the life that I lost because of celiac and I had that moment of breaking down. Like if I was just stronger. If I was only a little bit stronger.
M: Yeah
L: So yeah that, that is like the extent. That kind of wrestling with that kind of dichotomy of both feeling weak for being at a disadvantage but also feeling confident because I wrestle with that disadvantage on a daily basis and keep coming out on top. That’s why um I celebrated 30 so much when I turned 30…
M: Yeah
L:…because like I lived through all of that. I thrived through all of that.
M: Totally
L: I made it to 30 years old
M: Yeah absolutely. Yes 100%. Um, what was I going to say…There was something that I was thinking while you were saying that and I lost it. Um, yeah it’s interesting having that you know, its interesting having that sense of loss for something that we never have had.
L: Yeah, its really weird mourning a past version of yourself. Not just a distant relative. But like kind of like a distant relative, because you know what they were like or what they could have been like but you never actually knew, but you are still sad about the loss. You know?
M: Right right. And I think that like for both you and I that’s like impacted in the same way with uhh childhood family trauma and feeling that loss of like parents that we like also didn’t have.
L: Yeah
M: Like you know like your mom is still alive but you don’t have your mom, you know?
L: Yeah
M: And just like I told you the other day, you are never going to have the mom you deserve to have and it sounds like totally shitty to say it that way but it is true. I feel like everyone deserves to have amazing parents and the kind of idealistic caring you know parents, and stuff, and just some of us just don’t get that in life. I don’t…I’ll never understand that especially being a mom myself. Like, I’ll never understand it, you know? Umm…
L: Yeah. No, um, I got my closure with her for the most part pretty well because I ahh, when we were in the midst of going through all the drama she was like trying to get me to come back as basically the man of the house. I um, I had one last conversation and I started the conversation and said very sternly, “Mom, we are going to have a civil conversation about it. We will take as long as it takes. If you raise you voice at me, guilt trip me or try to turn this into an argument, I’m done…”
M: Yeah
L: “…And I want you to understand that going into this that if that happens, I am done” and she started getting angry and overly emotional and I hung up the phone, blocked her on everything, and that was what the end of it was. So like I tried one last time to extend an olive branch. Like I gave her one last chance and put the ball in her court.
M: Yeah
L: So I never spend time wondering what I did wrong. It’s that I gave her the change to do right when I felt wronged. She chose not to. I feel like I’m allowed to continue to feel like I was wronged by that if nothing else.
M: Totally. Totally. I know what I was going to ask you. Um, ok so celiac disease is covered under the ADA as you know. Um, and you know like you have threatened to sue employers for medical discrimination and stuff like that. But like, let’s be honest, as people with celiac disease the ADA doesn’t protect us worth fucking shit. You know? (Laughs)
L: You know, I will be honest and you can put this down if you want. I have made that threat so many times, no one knew it was an empty threat.
M: Laughs
L: But they don’t know that. I say I will sue for medical discrimination and they will go “Oh shit, yes ha.”
M: Yeah, I use it for the kids’ school. I mean I go and I get from the nurse, there is like a form and I get it signed by the doctor saying that you know that Kennedy is in in person school now that he has celiac and um you know, I make sure that everyone knows that celiac is covered under the ADA. And I also use it all the time and we know that it does fucking nothing.
L: Right
M: You know, um, even our own, even gluten free labeled food isn’t necessarily gluten free. It’s all voluntary. Stuff gets recalled all the time for being contaminated and that’s certified gluten free products.
L: Yeah
M: And then of course we all know the um you know the whole um bull shit about Cheerios and certified gluten free oats and how like none of it is actually safe for us at all. So we are covered under the ADA yet our FDA doesn’t protect us.
L: Right
M: Which is crazy.
L: It’s crazy especially with what you have said how prevalent the illness is. It really comes down to just more research needs to be done, like more awareness needs to be put out there.
M: Yeah. Well, um, I wonder…okay. I’m obviously not really an RFK Jr fan, but his whole platform um now that he is HHS secretary, you know has been like “Let’s get rid of all the shit in our food,” and I mean obviously he is talking about processed food. He’s an anti-vaxer so that’s like just wild or whatever.
L: Yeah
M: But um like you do have to…I try to see both sides of stuff, you know. Um, you do have to wonder if him being HHS secretary is kind of, you know, would allow those of us with celiac to get out foot in the door with like ”hey, certified gluten free products aren’t safe, let’s get this fixed.” Right?
L: Yeah
M: I kind of maybe am hopeful that is like one good that that could come of it, because he is really big on like let’s get all the crap out of our food. You know, maybe just maybe he will strengthen some regulations when it comes to like gluten free foods. And maybe we can actually have like a real requirement, like labeling requirement. Because it was in 2011 that they um changed all the labeking that the 8 major allergens that they be labeled right? Gluten was one of those but the baker’s lobbyists got it taken out. Like in the 9th hour kind of a thing. They got it taken out and they made gluten um voluntary which everyone kind of refers to as the watered down regulation revolving around gluten when all the rest of the allergens are considered to be so serious it makes it…it comes across that gluten isn’t as important to be serious about.
L: Yeah, it’s an afterthought, not like an actual concern.
M: Right. But the way the bill had been originally written before the baker lobbyists had gotten involved was that it was just as serious as the rest of them.
L: Ummhmm
M: So you know again I just kind of an hoping that maybe that maybe there is more people listening and that I know that there is a lot going on politically and a lot of distractions but if this could be one of the distractions and it helps us, I’m down (laughs) You know?
L: Make the best you can out of a bad situation, you know?
M: Right exactly. How many times have you gotten sick from gluten free labeled food that you know. Or like does it happen often to you. Do you stick to just like basics stuff? I stick to a lot of non-processed stuff myself.
L: I can’t exactly afford to go full non-processed. I tend to avoid things that are like gluten free versions of other things. Like really its bread or maybe pop tarts are the only things I’ll eat that are like gluten free version of something. Otherwise, I try to just eat things that I know are naturally gluten free. Like if I want to drink, I’ll get tequila because that’s made from agave, its got no wheat in it. I’ll eat rice or I’ll eat corn tortillas instead of gluten free flour tortillas. You know what I mean?
M: Yeah I’m the same way.
L: Because like especially if you know how to cook, you can eat very well on a gluten free diet. That’s actually something I thought about making a video blog that is a recipe channel going over budget friendly gluten free meals for celiac disease. Because a lot of it is really expensive especially if you don’t know how to cook.
M: Yeah. Yeah absolutely. I was also going to because like I said, I think I want to start a YouTube again that’s focused on all of this. And I probably will want to do some interviews and stuff on it. You know, kind of make it like a combo of a bunch of different things. Yeah and definitely want to go over like cooking stuff. And in the book I would actually like to even include you know, I don’t know, some recipes or like ways to substitute stuff and stuff like that just because people are always asking especially if someone is newly diagnosed, like what do you eat? Well, it’s actually not that bad, once you get used to it and if you can cook then you are good. But, you know, you can eat so many good things without having gluten. Right.
L: Well, you know something I found out interestingly enough as an example. Obviously we can’t have ramen but um if you go to Asian markets a lot of what goes into the food is stricter over there. So you can buy Vietnamese pho which is made with rice noodles and I have had no problem with those. I’ll like break and egg into it, have some stir-fry veggies, cook that all up and it still costs like fifty cents a packer like ramen does it’s just like that’s the kind of stuff I want to teach people, if you think outside the box and look in other places, you can find good gluten free things just as cheap.
M: Yeah totally. And um, cooking from scratch too. You know, um I mean I make all the Louisiana stuff. I make all the Louisiana stuff. Everything that you need a roux for and all that stuff is like you can make. And the kids they like love to bake stuff. Presley makes baked goods all the time. I just like try to have obviously the gluten free flour is more expensive and stuff but you know if you are making stuff from scratch…you are making brownies and using cocoa powder and sugar and gluten free flour, it’s a lot cheaper than buying a box of gluten free brownie mix.
L: Right yeah
M: So we try to do that as much as possible. And it’s fun to learn how to cook. You become so much of a better cook cooking from scratch.
L: Oh yeah absolutely.
M: I think it’s cool. I think that’s one way that like people that embrace the cooking aspect of having celiac, that’s one wonderful benefit that it adds to our life. Like, literally you are always going to be the best cook in the room.
L: Right: Yeah, no I fully believe in the phrase, adversity breeds innovation. Like having limitations like that forces you to think outside the box and forces you to consider things you would not have considered otherwise.
M: Oh yeah
L: Like I will absolutely attribute the horrible things that happened when I was going through my celiac diagnosis to be the one good thing out of it was that I was able to cook so much better because I started from such a bland diet and I slowly added things into it so I learned cooking from like a fundamental level basically.
M: Ummhmm. I had to do the same thing when I um first got diagnosed. I really only ate rice and just some veggies and I didn’t even know what else…I was actually vegetarian so I didn’t even know what else to eat. I wouldn’t eat any beans because they make you too bloated and nothing very rough so like I mostly just lived off of rice. And then I started eating meat again, oh I guess I ate a lot of shrimp. Um it was like rice and shrimp is what I ate for like none months probably. And then um, and then I started eating meat again and started eating chicken and more veggies. And I didn’t eat any dairy for like four years. I couldn’t eat dairy. My stomach was just too torn up to eat any kind of dairy, even butter. So um and then that got better. Eventually it got better. And now, it’s not like I’m going to overload myself with dairy. I’m still a little dairy sensitive If I eat too much of it. And certain forms of it bother me more than others. But you know?
L: Yeah
M: But um, but yeah it was the same thing, just slowly adding stuff back in and if it didn’t sit well with me, I wouldn’t try it again for like a year. You know, and then I might try it again until I figured out what I can handle but you know, definitely cooking. I always did like cooking. And funny thing is before I became…before I went into English and Literature and writing and stuff as a field in college, I actually was going to be a dietician. And for three years I studied dietetics and I didn’t know I had celiac. I knew nothing about it at the time. My stomach was always messed up. I was undiagnosed with symptoms for over ten years. And um, I um worked in a research facility in Baton Rouge, at Pennington in their metabolic kitchen where we cooked everything from scratch for the study participants. We had all these grants and studies. And I loved doing the cooking and all that but he weighing stuff is what made me change my major. The only person who was doing having any fun writing papers for the research study was the head of the lab and she had her PhD. And so I was just like, you know what, um, I guess I’ll have to get my PhD. Then I was like, you know if I’m going to get my PhD, I’m going to do it in what I like the most and that’s English. And so I changed completely. And everyone…
L: Right
M: Everyone was mad at me but it was such a me thing to do . But um, I guess I’m really glad for it now because I have both backgrounds, you know?
L: Yeah absolutely
M: And I guess some things are meant to go the way that they go.
L: Yeah absolutely, absolutely.
M: Yeah, so anyway. I don’t know that there is anything you want to add but I have really been enjoying our conversation.
L: Oh me too. No, I actually. I will be honest. Talking about this has unearthed a lot of stuff that I didn’t think about for a long time. Like in a good way. I don’t mean like I’m traumatized or anything.
M: (Laughs) Yeah
L: But it just feels really cathartic to be able to know that in some shape or form my story is going out there because I…I mean it is just such a unique situation. What are the chances you are going to run into someone who understands.
M: (Laughs) yeah, um totally. It’s one in a million chance, you know.
L: Yeah, so I am grateful for this opportunity and to talk with you as always. Um, is there anything else that you needed to add or to ask me?
M: No. No, um I mean I have a ton of notes and like I said, I recorded this whole thing so I can go back and like transcribe it and kind of pull it apart. But no, I mean I’m sure that I might have follow up stuff and I really do want to get like a YouTube going so if you ever want to do like an interview in that way we can do that too. I don’t have like all the equipment for podcasting and stuff like that and I don’t even know if I’m really good at the technical aspects of doing like a remote interview, um in that way but I’m sure I can figure it out or get someone to help me figure it out. So if you ever want to do something like that you let me know.
L: Yeah, I know discord has a lot of options for that and I use discord often.
M: Okay cool.
L: They will have like streaming options for like different voice channels. I’ve seen a lot of people use that for podcasts where they will just stream discord calls.
M: That’s cool. Okay. I will definitely keep that in mind as I put everything up but um no I just really appreciate everything and your input. And I’m just thankful to also be your friend and um, if I have any other questions I’ll let you know of course. And if we want to do another interview about something also related, but I have a lot. I think this is a great start and I’m just excited to be back to working on this project again. And I don’t know what will happen when I publish it but I can always just self publish it through Amazon or whatever. And that might just be my first approach, just go ahead and get it out there but what I am doing is on my website, I have like a celiac book blog section so after I type up, you know make an essay out of this interview, it’s going to be on there first. So that is kind of like my repository for everything as I go through the process between the questionnaire and the interviews um, that’s going to be the place to kind of put the chapters up. Because just putting those chapters up makes me feel like at least it’s accessible to everyone already. You know?
L: Ummhmm, for sure. Thank you for being my friend. And I’m glad to help anytime you need, have any questions or want to talk, I’m always free to talk about this type of stuff. Um, yeah, its bee a great time. It’s good to hear from you.
M: It’s good to hear from you too. Well, hang in there with the jobs and stuff. And you know you can always be whatever you want. You’re only 30…um, I’m only 50. Like we have a long time left, I’m 49, but I’m turning 50 in May. But we have a long time left to do so many things. I mean, just when I look back at my past um 20 years, I’ve done so many things. (Laughs)
L: Yeah
M: And you have so many things yet to still do so don’t get too discouraged about your current situation because it’s just a fleeting moment. You know? In a pool of moments. And, you know there is always more opportunities and you know, you are great at um speaking. And I think that, I think that you are very articulate and intelligent. And I think that if anything that you could be a great motivator for other people.
L: Thank you.
M: Yeah, and there’s no limits to that. You’re welcome.
L: All of that really means a lot to me. I’m going to try to remember that as I like mentally pull myself back together.
M: Yeah. Well, I’m always here too. I’m just a phone call away or a message away so you let me know if you ever need anything.
L: For sure. Well alright I hope you enjoy the rest of your evening and I’ll catch you around.
M: All right, I’ll see you on the flip side.
L: Thanks
M: All right bye