TRANSCRIBED INTERVIEWS

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.

INTERVIEW WITH LARSON: 2/17/25 3:49pm Eastern

INTERVIEW WAS PROMPTED AS A RESPINSE TO THE FOLLOWIN 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