Episode 4 – Stuart

Stuart smiling at the camera

In Episode 4, Brianne talks to her friend Stuart about his Celiac diagnosis, crying in doctor’s offices, and politely declining food.

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Transcript

Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

Today I’m talking to my friend Stuart about his celiac diagnosis. You’ll notice that I commiserate a lot about eating gluten-free and being itchy and other dietary stuff, so check out Episode 1 if you want to hear more of my story. 

I have an extra disclaimer on this episode, which is that we are so definitely not scientists or doctors. It’s been years since either of us has actually researched the biological mechanisms behind celiac disease, so take everything we say with a grain of salt. And if you want to know more about what is actually happening inside the body with celiac, I encourage you do to outside research.

And of course I’ve got my normal disclaimer:

This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: Hello, Stuart!

Stuart: Hello.

Brianne: How are you?

Stuart:I’m good, how are you?

Brianne: I’m good. Okay, so I usually like to start this part by asking people if they were healthy as a kid. So think back to young Stuart. Were you a pretty healthy kid, or do you remember having health stuff then?

Stuart: I actually was a pretty healthy kid. I don’t think I was very sick very often. I will say when I got sick, I got really, really sick. But I didn’t really have a lot of colds or flus. I had chickenpox twice though.

Brianne: Oooh, me too actually.

Stuart: Yeah, I had chickenpox twice. But no, I wasn’t a kid who got sick very often, but again when I did get sick I got really, really sick. I had walking pneumonia like, three times. I was a pretty healthy kid, according to my mother, and I don’t remember being sick very often in high school as well, upwards to about tenth grade. And then tenth grade is sort of… if I were to really think about it from tenth grade to the start of university things started changing. I started getting a lot more rashes and headaches and stuff like that. So that was really more of the turning point. But from before tenth grade to being a baby, I was a really healthy child.

Brianne: Nothing weird except the chickenpox.

Stuart: Nothing weird except the chickenpox, yeah.

Brianne: And then you started to get rashes and headaches. Did you think that they meant anything, or were you just like “Here’s a weird thing that’s going on with my body”?

Stuart: I remember going to a dermatologist, because of course with acne as a kid you go to the dermatologist. And the dermatologist at the time said it must be a reaction to the laundry detergent you’re using. So my mother said she has a reaction to some laundry detergents too, so obviously, maybe I have sensitive skin. So we changed the detergent, and that helped a little bit. But not really.

I think it was more psychosomatic, where I thought the laundry detergent is different, so I’m healthy now, or I’m better.

Brianne: You were reading the symptoms differently.

Stuart: Exactly. I would still flare up with these really small little bumps on my arms and my inner thighs. So then it was explained away because I was a competitive swimmer, so we thought it was a reaction to the chlorine. So the doctor said “Make sure you’re washing your body thoroughly or rinsing yourself off after the pool, because kids have allergic reactions. It might be a mild form of eczema.”

And as a teenager, if a doctor says this then it’s obviously this. I’m not going to argue, who am I, a tenth grader with itchy skin.

Brianne: Right. And you don’t even have access, especially, not that that was that long ago, but especially even that long ago, in terms of access to information.

Stuart: Yeah, I think it was youtube just started in 2004 or something like that?

Brianne: I think it was even later than that, yeah. It’s all much more recent than we realize.

Stuart: And google was just sort of taking off, back then it was still Ask Jeeves.

Brianne: I remember learning about alta vista in school. In my middle school computer class, we watched a video about how to search in alta vista, which I’m quite sure he’s gone now.

Stuart: It’s completely gone. I remember recently looking up what happened to Ask Jeeves, now it’s ask.com. Powered by mozilla. But they actually have an article about Jeeves retiring.

Brianne:Nobody actually wants an internet butler.

Stuart: Not at all. Noone needs that, thank you very much. So no, there was not really a lot of access. And, of course as a 16, 17 year old, you think your doctor is right. And my headaches were explained away by, “You’re just growing up. You’re maturing and you are under a lot of stress now and you need to wear glasses more.” And then I started getting really bad stomach pains in 12th grade. And it would be intermittent, but no one ever connected all of them together. So they said I have a sensitive stomach, it’s again due to stress. In high school, I remember everything going back to stress. They would just say “You’re stressed out.” And I remember thinking “I’m stressed, but I don’t think I’m any more stressed out than anybody else.”  I didn’t know why my body on certain weeks was falling apart. My classmates don’t have rashes on their arms or aren’t dealing with crippling stomach or bad headaches.

So looking back now,  it’s maddening to me that I didn’t ask the question at the doctor’s office. Just saying “I really don’t get it. Can someone just explain it to me in a way that makes sense. Because right now, I’m not saying I don’t believe you, but I’m saying there has to be more to this.”

Brianne: Yeah. It’s amazing that comparison thing that you’re talking about because I feel like you eventually get to a tipping point when you realize that not everybody else is having this experience. Maybe you kind of know that not everybody else has rashes, but you write it off that everybody’s bodies are weird and this is the way that my body’s weird.

Stuart: Exactly. So I kind of just accepted that I guess this is my life. And it was really only furthered by the fact that the dermatologist who saw me first also saw my sister and told my 12-year-old sister at the time that she’d have acne forever. That’s just her life now. And my sister was heartbroken.  So I thought I guess my life is just rashes, I guess this is my life. 

Brianne: That’s a really effective form of dermatology, just your entire job is teaching people to accept their current situation. Acceptance-based dermatology.

Stuart: I just remember her coming home from the dermatologist and crying on the living room couch for an hour saying “I’m just going to be ugly forever.” And I remember sitting there thinking, as I was comforting her saying “No it’s going to go away. She doesn’t know what she’s talking about.” I was quietly accepting that, I guess I’m just going to have rashes. I guess this is just my life and I guess I need to be okay with that. And it was embarrassing because you could see it on my arms. It was noticeable enough that people would ask me what was happening, and I’d tell them I have rashes. Of unknown origin. Stress, if you will.

Brianne: I get stress rashes.

Stuart: I get stress rashes.

Brianne: I’m not particularly stressed right now, but…

Stuart: But, you know, maybe. I remember that also fed into later on in university, me believing that I was feeling a lot more stress than I necessarily was aware of. So thinking that maybe I am really stressed out and like, I’m broken and just don’t feel that? And maybe people are noticing that I’m a lot more unhinged than maybe I necessarily want to believe. I started to actually think, first year of university when I started developing ulcers, but I thought maybe my version of myself that I thought was true is not really what I’m projecting in this world. Maybe actually I’m appearing like I have just lost it. It’s like that scene from Man Of The Year with Laura Linney yelling about mayonnaise or coffee or something. And I just don’t see it, I think it’s fine.

Brianne: Like, I don’t think that I’m stressed, but everyone else can tell that my stress levels are at ulcer. 

Stuart: It’s at ulcer level. I remember going to the doctor my first year of university and them saying “Yeah, it’s a stress ulcer.” And I was like, “But  I’m not stressed,” and they said, “Are you sure?” And it’s really interesting because I remember actually being convinced that I was. And I thought,  maybe I am. I guess I’m really stressed. At that time, I was tutoring english, and I was working full time in a retail store, and I took maybe one extra class that I probably shouldn’t have done, and volunteering at the LGBT club at the university. So I thought I guess I’m just taking on way too much and I just don’t know how to process that stress. So I think I’m fine, but my body is telling me  I’m not. So I should probably listen to them. And the doctor’s only trying to help me.

But again, I’m still dealing with the stomach cramps, sill dealing with the headaches and the rashes. And I thought none of these things are related except for stress.

Brianne: No, all stress. And did you have the same doctor while you were in university?

Stuart: Yeah. So I had a doctor all through my childhood who was eastern European and believed that drugs solved all problems. Like, her catchphrase if she was on a tv show would be “I give you drug, you feel better in morning.” And I was like, “Cool. Awesome.” But then she left and went back to Europe and I just defaulted into another doctor at the clinic. And he ran the clinic, he owned the practice. And he was just very “This is what you have, this is what it is.” And there was no conversation or argument. And when you tried to ask him a question he’d be like, “But I’m the doctor.” And I was like, “You’re right, that’s correct. I don’t know what I’m talking about.” And it kind of shot down any ability to be a partner in my own health.

It was just I’m coming to you because I have a problem, and this is the solution to the problem, and there’s no further information you need from me because you figured it out. And for the longest time I was willing to accept that, until it became a tipping point for me that I needed to ask more questions.

Brianne: Yeah. And so when did that happen?

Stuart: So that happened… the last year of university or the first year out of university. I was living on my own and the rashes were just terrible. I was itching my skin it until I was bleeding. I was so itchy, and my headaches were so bad, and I just couldn’t concentrate on anything, and I was nauseous all the time. And I had recurring ulcers, I could taste stomach acid in the back of my throat always.

I went back to the doctor and I said, “There has to be something else happening now because it’s not just once in a while this flares up and it’s because of stress. It’s all the time and I can’t focus, I can’t do my job correctly, I’m not able to go out with friends because if I eat, I’m also sick and if I don’t eat, I’m also sick. And I can’t really eat anything, so anything that I eat makes me more sick.” And at that point I had dropped 40 pounds because I had only been eating a bran muffin in the morning and nothing else. Or I’d have a piece of fish for lunch if  I ate lunch, if I wasn’t feeling too nauseous.

So I went back to him and he listened to all of my symptoms and I told him  I was exhausted, my hair was coming out in clumps because I wasn’t eating, I could taste the stomach acid. And I remember he prescribed me two medications which I can’t remember the name of right now, but he said it was because I have really bad acid reflex. And I said “Okay, but that’s not a problem I’ve ever dealt with before, so what caused that?” And I remember him sitting me down, and he was not a doctor who had any empathy at all, everything was very black and white. And he said, “So I think it’s stomach cancer.” And I think it’s a natural reaction to do this, but I had a complete emotional breakdown. Because you feel so sick and you’re 22, 23, 24 years old, and someone just tells you casually in a conversation like you’d just asked somebody for a fax or if they saw your email, “Oh, by the way, it’s probably stomach cancer.”

Brianne: “What an interesting and fun idea.”

Stuart: And I remember being completely speechless and sitting there for a second, I remember hearing everything in the room, except I couldn’t process that information. And all I remember doing was trying to talk my way through it and crying. Just like, “I can’t have somebody cancer, I’m too young. I’m only 23.” And he said “You’re never too young for cancer.”

Brianne: What?! Sure. I mean, factually sure. But like…

Stuart: Right, and I said “But I… i can’t have it.” And he said he was going to prescribe me some medication and also have me go for some tests.

Brianne: Maybe lead with the tests? 

Stuart: I know. And again, I was sobbing. And he’s not offering me a tissue, he’s not offering me anything, he’s just listing off tests he wants me to have, and when I should go, and asking when I’m free, and do I have a schedule that I need to adhere to, and do I have some freedom from my exams? And  I was crying like, “Wait, wait, wait, wait. What is the percentage here? Am I like 80% have cancer? Or do I need a test first, or what is the medication for?” And I was asking about the rash, and how long have I had it for? And now I’m drawing it longform back to high school, and thinking “Oh fuck, I’m in end-stage cancer now.”

Brianne: Yeah, thinking you’ve been showing symptoms of something for about seven years at this point, is that about right?

Stuart: Yeah, about that. And it probably started off as something completely innocuous and now I have full-blown stage four cancer. And not to draw it back to Laura Linney,  but I’m like Laura Linney in The Big C. And I’m thinking, “Fuck, now I have to go home and tell my parents that I have cancer. And oh well, I’m going to die and I’m 24. I just finished university, and I haven’t started my life, and this is the end, that’s it.”

And this whole time, the doctor’s talking about schedules and when can I book you for this test, and do you have an opening here. And now extreme fatigue is a major symptoms of stomach cancer, and so are rashes and ulcers and I’m pale and that makes sense and I just feel like yeah, everything fits but it doesn’t fit all together.

Brianne: But it also all fit for stress. This cluster fits for literally anything. It’s weird to jump from stress to cancer.

Stuart: Exactly. And when I calmed down, I was able to ask him a question. Because then I got angry because he wasn’t giving me time to process. He was just asking me questions and I was just like, “You need to stop talking, I have questions. What is making you think I have cancer?” And he said, “You’re tired, you have ulcers, you have confirmed you’ve had three ulcers, fatigue, paleness, lack of appetite, weight loss.” But I was losing weight because I wasn’t eating anything and I had bad acid reflux. And he said that was another symptom.

And now I’m upset, and I said, “I’ve had these other symptoms for years and you never said cancer before, so… if you’re saying cancer now, are you saying it’s too late now? Is this later stage cancer?” And he said “Oh, wait until the tests get back before we jump to the cancer.” But he jumped to cancer. I didn’t arrive at cancer myself. I didn’t come in here thinking I have cancer. I came in here because I feel shitty, and I wanted him to help me feel better, because I was starting to not be able to live my life is an early twenty something.

So I went for the tests, which is basically an endoscope to go down and do a blood test and take a biopsy. And then it came back negative for cancer, thankfully. They did tell me I have stomach ulcers. So he prescribed me two medications. He said I must just have really bad acid reflux and the ulcer’s causing stomach acid to go into my esophagus, and he was worried about my esophagus getting damaged. So he prescribed me, I think it was nexium? The purple pill to lower the acid in your stomach. And another pill to strengthen the sphincter between your esophagus and stomach to keep the acids in the stomach area.

And that made me so so sick because I shouldn’t have been taking them together, which I found out from a specialist he sent me to three weeks later. I had a recertification for my lifesaving and my national lifeguard stuff. So I’m in a pool and I am literally getting out of the pool, throwing up in the bathroom, just having the worst diarrhea. I thought I was dying or something, but I’m so stubborn that I got back in the pool to continue doing this fucking recertification because I don’t have cancer, it must be something else, we’ll figure it out. I thought maybe this medication has to make me worse to make me better, I don’t know. You know that saying, that it only gets worse before it gets better?

Brianne: Yeah.

Stuart: I’m in my 24-year-old head, I thought it made sense. Like, I guess I’ll just get worse and then I’ll get better, my body will adjust and heal.

Brianne: And I’ll have my lifeguard certification.

Stuart: And I’ll have my lifeguard certification so I can continue doing this after-school program that I’ve started, where I’m watching 30 kids. And looking back, I probably shouldn’t have been doing that because I was so sick. I was way too far gone to handle that amount of work. I was exhausted all the time. I’m not talking exhausted like “I feel a little tired,” I’m talking fall-asleep-in-public exhausted. On transit, I was unable to keep awake to the point where I literally had to be getting up and down to stay awake.

Brianne: Only if you kept moving.

Stuart: Yeah. And coffee wasn’t working. I couldn’t drink coffee because it interfered with the medications. I couldn’t stay awake. I was taking an after-university course for writing and I couldn’t do the work. I had to drop it because I couldn’t do anything, I couldn’t concentrate. I also didn’t go to my graduation from university because I was so sick. I couldn’t go. I couldn’t sit there for three hours. I couldn’t do it. I was just having images of myself throwing up over people or something.

So I went to the specialist and I got my mom to drive me. We had a huge fight in the car because I didn’t want her coming in with me. Thank you for driving me, stay in the car, I’m an adult.

So I went to the specialist’s office at the hospital downtown and he asked why I was taking these medications together. And I said my doctor gave it to me. And he said they actually were fighting against each other and it’s probably making you toxic, basically. And I thought “Great. Awesome that’s just what I needed to hear. Thank you so much.”

So he got me off the medication and said he would really like to do some tests on me, because for someone my age, he didn’t necessarily understand why I was dealing with this battery of symptoms. And he said, “The weight loss is most concerning to me. I need you to be really honest with me, are you anorexic?” And I said no, but I can’t eat because it makes me physically sick. I’m only able to keep down a small handful of foods and even then, certain parts of the day… and I’ve realized that with the bran muffin and the carb-based diet that I was eating to keep me going, it was actually causing more problems, because it was the only thing I was eating and my body was being like, “What the fuck is wrong with you?” So by the end of the day I was so nauseous and so sick that I couldn’t eat anything else. And at that time I was vegetarian as well.

So the carb-based diet was very… it was big. It was a big staple of my diet. I didn’t make the correlation between days I didn’t eat carbs and only ate vegetables when I felt a lot better, but that didn’t register with me.

Brianne: Well, that was probably super rare, until the magic future, when you learned that perhaps you want to be on a diet like that. Why on earth would you… what would you even be eating? Maybe if you have eggs and bacon for breakfast because you go out and don’t have toast.

Stuart: And unfortunately, we live in a society where carbs are always available readily and cheap.

Brianne: Or free. They are the free option.

Stuart: They’re always the free options. So people always have a basket of muffins out, or cookies, or all these things. And I’d think “Okay, I’m going to have a muffin because it’s what people classify as a bland diet.”

Brianne: And fiber is good.

Stuart: And fiber is good, exactly. You’re taught in school that that is the energy that fuels you, and if you’re exhausted, then you obviously need more carbs to get through the day. And I wasn’t eating meat, so I had to fill it with something. So, anyway, he did a battery of tests. He made me go see a therapist because he didn’t believe that I wasn’t anorexic. And then she thought I was depressed and anorexic, and that I hadn’t accepted either. And that I had control issues. And yeah, I’m a controlling psychopath with an a-type personality. But I was also not anorexic or depressed. I think I was depressed, circumstantially, based on the fact that I had no idea what was wrong with me, and I was only getting worse. And nobody could tell me why. And she would ask if that depressed me. 

It became very hard for me because I was forced to see a therapist. The specialist I went to see was doing a battery of tests. He tested me for lyme disease, renal failure – that was another thing that he thought I was in – liver disease.

Brianne: What kind of specialist was it? That’s a broad range of tests to do.

Stuart: It was a digestive specialist who dealt with stomach issues and kidneys. And he thought I was in renal failure for some strange reason because my blood test was showing that my levels were very low for a lot of different things. And my white blood cells were really high.

Brianne: Which means infection.

Stuart: Infection, exactly. And he was said it didn’t make any sense. At that point, I had two ulcers. I had one in my duodenum and then one in my stomach. So one was a peptic ulcer, and one was a… duedotic ulcer? That word is awful. And it was just really bad. And then I was dealing with the rash. The rash is completely another thing. And finally I asked, “Can you just, at the very least because I’m scarring my body, can you send me to another dermatologist than the one at my doctor’s office?” And he said there was one in the hospital I could see, and we set up an appointment.

I saw her a week later and she was my godsend. Because I sat down and I just remember being really upset that day because it was a really shitty day.  I almost didn’t go because I was feeling so shitty and I actually took a taxi from my apartment and  I was a poor twenty-something. I’d been taking days off work, so my paycheck was fluctuating. So for me to take a cab from the beaches to downtown Toronto, it was a $27 ride. And I thought, “Well, I don’t eat anyway, so grocery money aside.”

So I took a cab all the way there because I simply couldn’t take public transit. And if I threw up at least until the cab driver could stop and I could throw up on the street. Because at this point… I think everyone gets to that point where dignity aside, you’re just like, “I’m sick now, and this is my life. People just have to understand that I’m a person who throws up on the way to the doctor’s office.”

Brianne: You just are now.

Stuart: Yeah, maybe I just have to duck into a starbucks, and not buy a single thing and literally kneel in front of their public restroom and be there for 20. Then leave and accept the looks people are giving you as you leave. I’m really sorry that I am this person. Because I think people look at you as a twenty-something and they think hungover or on drugs. And I have no idea what’s wrong with me guys… I have stress. 

Brianne: Very stressed, fortunate not to have stomach cancer.

Stuart: Exactly, but it could be a battery of other things. I could be anorexic and depressed. Again, no idea. So I remember going to her and she was looking at my arms and looking at my inner thighs. And I had to pull my pants down, and I just thought, “This is my life.” It was also all over my stomach too. And she said, “Oh, it looks gluten rash.” And I was like, “What is that?”

Brianne: “Excuse me?”I

Stuart: I literally was like, “What is that?” And she said it looks a gluten rash. And she said she’d had a couple of patients who’ve had this, and she’d gotten really well versed in it, it’s relatively a new thing that they’re looking at, but mine looked like a gluten rash. And she asked if I had any other symptoms. And I was said, “Like what?” And she asked if I ate a lot of bread and wheat products. So I said I was vegetarian so that’s a big part of my diet. So she asked if I had cramping and headaches? And she said I seemed very thin and maybe that’s my body type, but have I always been this thin?  I said I’ve always been lean, but I’ve never been this thin. And she said she was also noticing a little bit of patchiness on my face, and I said that happens sometimes.

So she said it looked like gluten rash, and then she pulled a book out and she pulled a pamphlet out or an informational document, and she let me read it. And in my head, I was reading it thinking this fits, this fits, this fits, this fits. And she’s just sitting there, whatever, no idea what I’ve gone through for the last years, actual years. And I again start crying, which I’m not a crier so this is very weird for me. I guess that portion of my life is chronicled by crying in doctor’s offices begging them to help me or because they figured it out. So I had to ask, what is gluten?

Brianne: Right! Imagine living in a time when you didn’t know. Compared to now when literally everybody knows.

Stuart: Everybody has a gluten intolerance or something. They’re like, “I’m gluten free and I’m trying to lose weight for Cabo, I’m intolerant.” And I’m like, “Die.” But at this time it was what, 2007? Nobody, very few people knew what that was, and when you say it, they might say “Oh, the new fad, I saw that on dateline.” But I didn’t have cable, I wasn’t looking for it, so there was no background information.

Brianne: So you asked her what gluten is.

Stuart: I asked her what gluten is, and she explained it was a protein that certain people can’t break down in their bodies. And their bodies actually end up treating their own organs as a disease, an infection that they’re fighting. You’re basically destroying your own organs in the process of trying to break down this thing. So she said there’s basically a blood test where you’re tested for tTg IgG levels, which I think is…

Brianne: IgG is definitely an antibody.

Stuart: Yeah it’s… tissue transglutaminase. Basically an enzyme. And the antibody as well. The celiac disease creates anybodies to attack the enzymes that you don’t have. So when you you eat gluten…

Brianne: You don’t have an enzyme that would break it down, so it’s trying to attack the gluten?

Stuart: Exactly.

Brianne: And it goes after your… what are they called… the villi.

Stuart: The villi in my lower intestines.

Brianne: And that’s what they go after when they’re trying to go after gluten. We’re doing really good hand gestures that no one will see.

Stuart: I know. No one will ever see this, and I’m fumbling through, it’s been 12 years.

Brianne: The exact same thing happened to me going over mine, I used to know all of this, and it doesn’t matter anymore so it’s gone.

Stuart: Literally, I took it away. I remember explaining it to somebody a couple of years ago and it all being there. And then no one’s asked me about it except for you in years. They accept it like, “Oh, gluten, you eat paper?”  It’s funny, because now everyone jokes about it. They’re like, “Remember when you were horribly sick, wasn’t that hilarious?” And no, but I see the humor in it now, I guess, but not really.

Brianne: Right. Sure, it was a weird time.

Stuart: Yeah, a weird time in my life. So anyway, she gave me an instructional manual, and I got into the whole thing with the specialist and the doctors and the years. And she printed off a meal plan for me, she basically really quickly went online and there was a very basic meal plan, and she told me to follow it for a month. She said it would be ideal if I did it for two months and see if things improve, and if they don’t, I have nothing to lose, I tried.

So she didn’t prescribe anything for my rash, because if it was a gluten rash, it’ll go away by itself. But there was nothing that she could give me topically that would help with this. All they could do is basically put something topically to ease the itch, but even then it’s still going to look inflamed. So I took the meal plan and I became an insane person and only made meals that were three ingredients. It was salt, the vegetable or a raw vegetable, everything had to say gluten free on it. Even when it looked…

Brianne: Like stuff that wouldn’t be contaminated. Well, you wouldn’t know.

Stuart: I wouldn’t know. And also anything that was labeled gluten free at that time in 2007 was super expensive, and you only bought from Whole Foods.

Brianne: Which Canada didn’t have yet.

Stuart: No, I think there was a health food store on Queen Street that called itself Whole Foods Beaches. And it wasn’t real Whole Foods, but it sold all that same stuff.

Brianne: Well, and it was that one really dry rice bread with the orange label.

Stuart: And hummus, that was already gluten free, but they labeled it gluten free and marked the price up four dollars.

Brianne: I love how a lot of products have started doing that in the last five years. Things that never had gluten in them now are labeled gluten free. It’s like, thanks cheerios.

Stuart: Yeah, or thank you almond milk. Thank you so much for being gluten free. And then of course, the price spikes. As soon as “gluten free” is on that, the price spikes, it’s absurd. So I remember going home when I was an insane person, I was living with my friend at the time. I tried to explain to her what it was, and she said, “So you’re saying you’re allergic to bread? But I’ve seen you eat bread before.”

Brianne: Oh my god.

Stuart: I know. But I told her, “I don’t know, I’m just trying this out.” And she asked, “So everything, even potato chips?” And I said again, “I don’t know.” Because nothing was marked gluten free at the time. So I cut out everything it was basically vegetables. It was rice, gluten-free quinoa. Hummus, eggs. This is my life now. And then I got salmon as well. And it was funny, the first week not a lot changed. I didn’t feel sick a lot, I wasn’t nauseous all the time. My headaches slowly subsided.

But then I started going through withdrawal, which is not a symptom they often tell you about. Gluten affects your brain the same way a drug would. It’s the only protein to actually permeate the derma of your brain. To react to your brain like a drug, which is why women who are on their periods crave carbs, because you feel better, your brain registers it as you feel better when you eat carbs because it’s a sugar, it’s a high.

So I started going through withdrawal, which no one told me I was going to go through. So I became an insane person. And I’m a pretty level moderately tempered person to begin with, I’m very apathetic to certain things. So me screaming at people and yelling, actually yelling, at people in a store or where I worked… they had to say “Stuart, do you think you need a moment?” My moods were all over the place. I was hungry, even though I wasn’t hungry. I had hunger pangs that weren’t actually there. I was moody. It was a whole thing.

But I wasn’t nauseous. I didn’t have stomach acid in the back of my throat. And a week or so after that all went away, I started feeling better. And my rash is slowly going away.

Brianne: Three weeks in, basically.

Stuart: Three weeks in to a month. A month, my rash was gone. I wasn’t itchy. My skin had cleared up. I started putting on a little bit more weight. My color returned to my skin, that was the other thing. My hair started being shiny again. If you had seen me, everything was dull before. My skin looked awful. I had weird, peaky kind of skin, fallow almost. My eyes were dull, my hair was dull, my fingernails were dull. Everything was dull. I was itchy and gross. And swollen, I didn’t realize how swollen I was, because all the swelling went down and I was even thinner at the time. But I was slowly putting on more weight every single week. I was gaining, three to four pounds.

Brianne: Because you were going back to your healthy weight set point.

Stuart: Exactly. And I’m 6’2″ and I was 155 lb, which is disgusting. I was skeletal. So by month two, I was up to 165, almost 170. So I looked normal again, not completely up to where I should have been, but not too alarming. People were asking “Are you okay, are you? Are you feeling better?”

And I remember going back to the specialist, and explaining what I thought it was. And he basically said, “That’s not a thing.”

Brianne: Celiac?

Stuart: Yeah. He said celiac disease is very, very uncommon and this is probably a placebo effect where I think it’s working so therefore it’s working, but it’s only temporary.

Brianne: Okay, sure.

Stuart: And at that point, I was so happy that I was like, “No, everything is better. It’s also almost been a month, almost two months, and this is better, why are you telling me it’s the placebo effect?” And even if it were, I don’t think the placebo effect would last for two months, I think it would be a couple of weeks at most. When you give people sugar pills who are dealing with terminal cancer or terminal diseases, it’s a week, maybe two weeks. They have this burst of energy and then there’s a sharp downfall, and I wasn’t having that.  So I said I would really like if he could just give me the test. And he didn’t think I should have it, and at that point it was out of pocket. So I said I’ll pay the money, I don’t care.

Brianne: And was that to get a scope or for the blood tests?

Stuart: That was for the blood test and the scope as well, it was a two parter. But for the blood test and the scope you had to go back on gluten for a certain amount of time. You had to have your tTG IgG levels back up.

Brianne: The damage has to be happening for the damage to show up.

Stuart:You have to be symptomatic. You can’t be asymptomatic for it to get a result, unfortunately. I think that’s the worst part about being celiac is unless you’re actually symptomatic and are willing to go back to that level of feeling sick, you can’t get the test. And that’s why most people who are celiac, who try out the diet first or have an intolerance of some sort, don’t have the test because they don’t want to feel sick again.

Brianne: Yeah, because especially if you don’t need medication.

Stuart: Exactly. If you don’t need medication and you’re living, finally. And that was the weird part is I finally understood that a lot of the things I was feeling, no one else felt the way I did. I just assumed that when people eat a big bowl of pasta, they were tired and cranky and had bad stomach aches. I just assumed that was what pasta did. So looking back now, I realize that I was actually taking things out of my diet that made me feel sick, but never correlating it with what it was doing. I just thought maybe I don’t like pasta, maybe pasta doesn’t affect me the same. I don’t like it, I hate it.

Brianne: Not for me.

Stuart: It’s not for me. Maybe, my stomach, I’m just a person who doesn’t like pasta. And that’s my thing. And people go out and have pasta, they love pasta, they talk about pasta all the fucking time, and I’m like, meh. I don’t like it because I feel sick but I assume they feel sick too. Or beer, for example. I was never able to drink beer. People would go to a university party, and play beer pong. I would take one sip of beer and be bloated out to there, literally choking down vomit, and bleach pale, and having to go home. So, beer’s not my thing. I guess I’ll switch to vodka. I can manage vodka.

But after a while, I actually had to go off alcohol for a year because my stomach was so damaged that I wasn’t able to have alcohol. So the specialist said, “I really think the damage you have done, I haven’t seen this damage to your intestines or your stomach lining.”

Brianne: After the test?

Stuart: This is after the tests, yes. I went back on gluten for a month, two months, and then I had my test. It came back positive. But at that point,  I went for another test with my specialist and they had sent him the scans and the pictures, and he said “You were damaged when you first came to see me, but the level of damage to your stomach lining and your small intestine are so bad that I think that you should go on your gluten free diet.” And he said it to me like with air quotes, “Go on your gluten free diet.” This fad diet, if you will. It wasn’t like it was serious, it’s confirmed by these specialists, this is diagnosed, I’m actually celiac.

Brianne: And this is the treatment protocol.

Stuart: Yeah, this is the treatment protocol. But he still treated it like I was some stupid millennial being like, “Yeah, take your fad diet and do that, but also don’t drink alcohol, don’t have spicy food, and don’t do this for at least a year.” And every three months I had to come back and do another scope and see how things were progressing. But for a year I didn’t drink at all, I didn’t have any spicy food, I was pretty much healthy. And I only started reintroducing food into my system a year later, when I started feeling a lot more comfortable with my my diet and being able to play with it a little bit. Asking do I have to be as strict with certain things, like chips, for example.

I was really, really strict with it for eight, nine years, within reason. Certain things became gluten free, chips became gluten free, I would reintroduce them slowly.

Brianne: What does strict mean to you?

Stuart: For me, it meant I never wanted to go back to feeling that way again. It was seven years of my life that never had to happen, five to seven years. It never had to happen and it makes me mad. Because I’m mad at myself in one regard for not standing up for myself more, but I’m also mad at the series of doctors and specialists I had who never thought to think outside of the box and say maybe it could be this. It happened to be a dermatologist who, I swear to god, if  I could erect a statue to her in my life,  I would.

Brianne: And if you hadn’t seen her trying to get symptom relief, because she’s not the specialist who needs to have that in her wheelhouse. So if you hadn’t ended up with her, you could have seen the dermatologist that I saw who told me that I had scabies. And then you would have thought…

Stuart: I have scabies now. I have stress-induced scabies.

Brianne: Yeah, yeah, cool. I have scabies. It’s complete happenstance. It would’ve been another few years before the gluten-free craze hit. And then you might have thought “Hut, maybe that’s for me.” Which also would have been luck.

Stuart: Exactly, it would have been complete happenstance and luck. And the one thing I find hilarious about it was the fact that this specialist was an internist. He specialized in internal medicine and internal organs, and for him to completely just disregard it and look at the symptoms microscopically one at a time and not together. Or figure out that it started with a rash.Or started with headaches and a rash intermittently, and it got worse from that point on. To the point that I was so, so sick that everything happened and then well, now he’s super sick, therefore it has to be these giant things. And we’re never going to treat the underlying start of it.

And it kept being me asking, I remember just wanting at the very least, and it’s so sad it became at the very least can you just make me not itchy anymore? I remember constantly asking at every doctor’s appointment I went to, which was so many. They couldn’t offer me a solution, they couldn’t make me feel better, they didn’t know what was wrong with me. But as sad as it was, I just wanted them to fix this one thing because I would still be a little bit better. And for her to mention it in passing, “Oh, it’s a gluten rash.” It was natural for her to say what it was.

Brianne: Totally obvious.

Stuart: Yeah, totally obvious, this is what it is. And I think I remember asking her if that’s a form of cancer? Is that a form of stress? Is gluten a form of stress? Is that a doctor term for it? And she said, no it’s a whole other thing.

Brianne: It’s basically a food allergy, just not the way you think about allergies.

Stuart: She told me it’s an autoimmune disease. And I said “Oh, okay, what’s that?” And of course the only autoimmune disease I know about is lupus, and that was from watching House. Every episode the fucking doctor would say, “Maybe it’s lupus.” No matter what it was, from a bee sting to actual cancer, they’d say it could be lupus. So I remember looking that up, autoimmune disease, lupus, when your body attacks itself. So for her to say that, I thought autoimmune disease is something that can be managed, it’s something that could be treated. I’m not going to die from it. Yes, people with lupus can have complications that cause them to die. But this is not that, it’s still manageable. I’m not terminal. There is a treatment for this. And that made me feel better.

Brianne: And there can be a normal, within the bounds of the diet. And so did you ever need medication after that? 

Stuart: No, I never needed medication after that. All of the symptoms went away. I still had to take medication for a year to repair the stomach lining. It wasn’t really medication, it was more natural. I want a naturopath to be perfectly honest. Just to repair the damage to my stomach, to reintroduce natural flora. Because the medication they had me on ruined everything. I had nothing left to fight off anything or to digest any food. So going the gluten-free diet and then really focusing on natural vegetables and green vegetables and all of these vegetables that would reintroduce minerals and proper enzymes into my system naturally. Plus taking these herbal supplements to reintroduce healthy flora to actually do all these things. That’s what I took for a year and on and off after that.

Brianne: Probiotics.

Stuart: Probiotics, yes, that’s what I was looking for.

Brianne: Well, and that’s the thing about celiac specifically, because of where it attacks, right? Is that some people have wildly different symptoms because it’s basically that you’re malnourished. Because even if you are eating, even if you’re able to eat regularly, the organ that you have that should be absorbing minerals isn’t doing its job. So people become super malnourished even if they’re able to eat.

Stuart: Yeah, and that’s the scariest part.

Brianne:Yeah, yeah. And you don’t know why. So now that was a long time ago, you said eight or nine years.

Stuart: Yeah, I’m what, 32 right now. I was fully diagnosed when I was 25, 24.

Brianne: So that’s seven or eight years? Wow. So that’s a long time. And since you changed your diet and maybe now know that you can eat chips,  I’m sure things are labeled better and it’s easier to learn about what is out when it’s wheat, barley, rye, whatever the gluten grains are. Other than that, does it impact your day to day? Or how how has your health been otherwise? Both of those things?

Stuart: So I’ll answer the first question first, how it affects my every day. Even though we have all of these, we have so many more options now for gluten-free foods and other alternatives. But the stigma around celiac disease is still a thing where people don’t believe it’s a real thing. Every single day I have one person at least, or within two days, I have someone ask me “Oh, but could you just eat it anyway? Do you have a cheat day?” And no, I don’t have a cheat day. Or if my food is contaminated and I feel sick, people will say I’m being dramatic, it’s not that bad, I’m not showing symptoms that would necessarily be constituted as… like if I were to puke up blood, they would say, “Oh my god, you’re really sick!” But for me to say that I actually can’t concentrate,  I’m developing hives on my face. And right now, this has been out of my system for so long, my symptoms are a lot worse. So it’s faster, stronger. It’s instantaneous. And it doesn’t go away for a long time, it’s your body attacking itself. And people will say, “Oh, just drink lots of water, it will flush out your system.” And I’m like, what? Or “Take an antihistamine.” Like what is this?

Brianne: It’s not a histamine reaction.

Stuart: Exactly. I’m not having a hay fever attack, or a normal allergy attack where pollen entered my system and I’m now itchy and sneezing.

Brianne: I hate when people tell me to take allergy medication just in general. Because I have a lot of sinus problems and that’s not related to what’s going on! I’m glad they’ve worked for you.

Stuart: Yeah, thank you for telling me to take an allergy medication. It’s not going to work. Or when they ask “Do you want some water, to flush it out of your system?” Flush what out of my system? My organs out of my system? Yeah, sure, give me that. Yeah, or at a restaurant, if there’s something that I can’t eat there, they won’t think of me. Right now it’s fine, it’s finally to a point where I’m able to look up a menu beforehand. But I also find it really, really hard when people ask people if they’re vegetarian or vegan, or if they are lactose tolerant, but when it comes to celiac disorder, it’s not considered so much.

It’s starting to be more and more, especially with more millennials saying this is a actual disease, this is an actual illness, this should be a thing we all… because I think millennials are a lot more cognizant of what they’re eating in general. So people are making conscious choices to be vegan or be gluten free, no matter if they have a problem or not. I think they’re very cognizant of where their food is made and of what’s in their food. So I think now with millennial companies and young companies, it’s becoming more and more of an option. We should represent that. And they oftentimes pair it together with veganism so it’s gluten free and vegan together, and this is your meal, great.

Brianne: This is a really specific combination of foods.

Stuart: Exactly, and that’s totally fine. But for my everyday life it doesn’t really affect me. I’m able to cover myself if I’m meal prepping and I’m doing things for me. It becomes tricky if I’m dating a new person or I’m going on dates or I’m meeting new people and they offer me a cookie or something. Today, for example, one of the people I work with made cookies for the staff, and she offered me one. But she didn’t offer it to me like, “Here, do you want this?” She put three of them on my desk for the people that were sitting working with me, and she said, “Enjoy it!” And instead of me saying, “Oh, I can’t have this, I’m allergic.” I just said thank you and offered mine to somebody else. But then if she follows up, I have to say I didn’t eat it. I actually can’t.

So I make cognizant decisions about is it worth me going into the whole rigmarole of telling her or just saying yeah, it was delicious. Which is what I end up doing, I’ll say it was really good, thank you.

Brianne: People, especially with baked goods, people get offended. I think there’s a separate diet mentality, because I’ve turned down cookies before and people come at you. They’re like, “Oh, come on! It’s just a cookie.” Or “It’s the holidays!” But no, it’s not that I’m trying to lose weight, I don’t need you to talk me out of my weight loss diet. But I’m not going to eat that cookie, it’s going to make me sick.

Stuart: So true! Everyone always thinks, oh it’s the holidays or it’s only little. Or it’s only flour butter, there’s no chemicals in it.

Brianne: It’s homemade.

Stuart: Yeah but no, I can’t have it, it’s okay, I don’t want it. But you’re trying to be polite, because you don’t want to get into that long conversation. Because as soon as you say something like, “I have this disease,” they’ll say, “My cousin’s friend’s uncle has that.”

Brianne: “Have you tried yoga?”

Stuart: “Have you have tried this, this and this, or yoga, or have you tried relaxing breathing?” And you say no. Or “They have this wonderful pill now, arexol, and you can take it and it cures your celiac disorder.” That’s not a thing and I’m not going to take that medication, but thank you so much for your candor. And you end up being that asshole who is like, “I didn’t ask for your opinion and I didn’t really want it. I was just trying to say I don’t want a cookie. And I didn’t want to get into this conversation we’re having right now.”

Brianne: I didn’t want to lie to you in 20 minutes about having eaten your cookie and now this is worse.

Stuart: Yeah, this is so much worse for me. Or in meetings people will put out baked goods and they order gluten-free things, but then put them on the same plate as things that are not gluten free. And I don’t eat it and they get really offended like, “But I bought you a gluten-free thing!” Yeah, but then you put it on a bed of crackers so therefore it’s not a gluten-free thing. 

Or if I have to have a conversation with my family about even though yes, meat is gluten free, when you cook stuffing in the turkey, it then makes everything not gluten free. And no, I can’t have it, and no, I’m not being an asshole, I’m not being difficult, it’s just that I can’t have it because I will get sick.

And they’ll say, “Oh, you’re always so difficult, you have so many restrictions.” But not really, just one. I just I can’t have that. I think you become, at least for me and maybe for you as well, you start developing these coping mechanisms for is this worth talking about? Do I have to have this conversation, or can I just say I don’t want it? And you just have to accept the fact that people will think you’re an asshole for saying you don’t want their cookie. And you’re right, people get really offended with baked goods. They make something, and they assume you’re going to eat it no matter what. But I don’t want it. If you made me, I don’t know, crustless pumpkin pie, I would maybe entertain that?

And I always ask questions like, “This looks really good, can you tell me how you made it? I love baking.” And ask them to list the ingredients off in an indirect way. So I can say it sounds great and move on. And maybe you’re the same way, where you ask it in roundabout ways because you don’t want to come out and ask somebody, “What’s in your cookie, tell me right now, I’m gluten free.”

But you can say, “Hey, I’m a baker too, how did you make this?” And people who bake always want to tell you what they made it with. They’ll say “Oh, it’s only four ingredients, or only two ingredients. I made it with magic!” And you say “Awesome, cool is there flour in that magic?” But of course, why would there not be! Cool, check mark, I don’t want it, that’s so great for you.

Brianne: Or that gravy isn’t for me, whatever it is.

Stuart: Especially around holidays or any kind of dinner party, I will reach out to the host ahead of time to say, “Just so you know, I actually have celiac disease. I can’t have gluten, so please don’t feel obligated to make me a meal. I will bring my own meal. But I don’t want it to be weird, I don’t want it to be a conversation.” So sometimes they’ll ask what I can have and I’ll say this is what I can eat. Or I’ll ask what they’re making and we’ll have a conversation about it. And I can say, “Well I can’t have this, but I’ll definitely have the vegetables as long as you keep it away from the rest of the meal.” And in that time, that’s one of those things, if you’re going to be flexible, you have to really make that commitment to ask, “Do I trust this person enough to not contaminate. Their kitchen as obviously not gluten free, am I willing to take that chance?” And depending on the person, how well I know them,  I can be very direct with them and say, “I’m not going to take that chance. I’m going to bring my own meal.”

But I often at times just don’t eat. I will go to the meal, and I’ll say, “I’m actually not feeling that great right now. Do you mind if I just skip dinner and maybe graze later on? But I didn’t want to miss this.” And I’ll eat beforehand. But it goes off a lot better if you don’t feel well, people are a lot more forgiving than if you go to a meal and tell them you’re not going to eat. Then it becomes what did I do wrong?

Brianne: It’s personal.

Stuart: And you’re personally attacking them. And I don’t want to personally attack somebody. I also don’t want someone to be responsible for my disease. And my life is better now, I’m not dealing with all these things. I’m a healthy weight. I don’t deal with the same symptoms. I’m not sick like I was. And yes, there’s cross contamination. I can’t avoid it sometimes, sometimes it just happens. And I’ll be like, “Fuck, I’m going to feel shitty for a couple of days.”

Brianne: But you know that it’s going to get better.

Stuart: I know it’s going to get better.

Brianne: Navigating diet around other people… that’s all. I really feel that. People really take your dietary choices personally.

Stuart: They do, and they take it upon themselves to fix you. And I find that really stressful myself, because I’m someone who’s very independent, and  I don’t need to be fixed. I need you to just be respectful of the fact that I don’t want to eat your food. I’m not doing it to be mean, and I’m not doing it to be an asshole. I’m doing it because I don’t want to feel shitty or it’s more important for me to be healthy than for me not to hurt your feelings. And that’s the thing. If you told someone you had cancer or you’re pregnant or any of these other acceptable ways to turn down food.

Brianne: Things that people know about.

Stuart: Yeah, things that people know about or can relate to. For people with cancer, there’s a physical manifestation that is tangible to them. Our media has, it’s on our television shows, people can relate to that. And see that someone has to be handled with kid gloves with their diet and be very careful. But celiac disorder is still this weird stigma where people ask if it’s real.

Brianne: Yeah. “Gluten-free diets might actually hurt people!”

Stuart: I know, and you have CNN or MSNBC coming out with articles like “Gluten Free: Myth?” And no, it isn’t.

Brianne: No!

Stuart: And I understand what they’re saying, it’s for the 22-year-old guy or girl who wants to lose weight for Cabo and thinking gluten free seems like the best diet for me. But really anybody who’s not suffering from celiac disorder or some sort of intolerance should not be on a gluten-free diet. It’s high in starch, it’s high in sugar. You can process gluten.

Brianne: Yeah, and now with paleo and stuff, which I think plenty of people do well on that, but when you’re just wanting to eat bread or just wanting to eat cookies, gluten-free products are not a healthier alternative to just eating bread or cookies, they’re a crutch.

Stuart: They’re a crutch. And most people who are celiac who have been diagnosed as long as I have and have been off wheat, I don’t buy a lot of the products that are gluten free. I can make my own. I eat differently and it’s fine. Instead of going to buy gluten-free bread, I don’t need to eat bread. My mother buys it for me because it’s something that she’s used to buying, so she thinks I want it too. So when I’m home at her house and I’m visiting her, I’ll have a peanut butter sandwich with gluten-free bread. But I actually bring my own peanut butter because they know that their peanut butter has gone on bread. I don’t toast it.

And my parents are still learning those things. We were at the cottage this weekend, and my mom bought me gluten-free bread, and she put it the toaster and I couldn’t have it. No thank you. And she got really offended, because she took it upon herself that she ruined it for me. But I’m not mad, I’ll just take out two more slices of bread and  it’s fine.

Brianne: I don’t need this whole loaf anyway, so.

Stuart: I’m not going to eat it, it’s going to stay in this freezer for an untold amount of time. I’m fine. But also my mother and my parents have taken upon themselves to feel bad that they were poisoning me as a child. But I’m not angry, it’s been a long time, I’m good.

Brianne: And there’s no way you could’ve known.

Stuart: Exactly, there’s no way. And she’ll say, “Well I tested you for everything else.” But they didn’t know to test for this in the early 90s, I don’t know what to tell you here. Anyway.

Brianne: So it’s the social stuff.

Stuart: It’s the social stuff, yeah.

Brianne: It’s super relatable. 

Stuart: I think that’s the dangerous part of it. There’s a person at my work who’s newly diagnosed celiac, it’s been a year for her. And she’s still doing the same thing where she’ll say, “I guess I’ll have a beer because everyone is having one. I don’t want to be the odd person out who has to order something else.” Or when someone goes out with her and asks if she wants to get a pitcher of beer. She doesn’t want to say, “No, I’ll have a drink.” So she’s still dealing with that. When you’re ordering a meal with people and they decide to order a pizza, she doesn’t want to order her own pizza. So she’ll just go in on an extra-large pizza and eat that and feel shitty for days.

And I told her once, the only person that you’re hurting is yourself. Do you think that person gives a shit later on that night that you didn’t have a pitcher of beer with them? They’re going to get the pitcher of beer if they want a pitcher of beer. It’s a socially accepted thing to ask somebody at the table with you if they want to go halfsies on beer, you can say no. Maybe you want wine, maybe you want alcohol or a liquor or spirit.

Brianne: People say no for other reasons, you’re just not used to it yet.

Stuart: Yeah, and that’s the thing. You can say no, and you should never feel bad to say no. And I still struggle with that sometimes too. But it’s more struggling with the fact that why am I having this conversation about your fucking cookie? I don’t want it. And that’s what I struggle with it. I have no problem with saying no. I have a problem with the conversation that happens after. And that’s my social problem.

Brianne: We should make buttons or cards to just hand people.

Stuart: Yeah. I’m gluten free. I’m fine. Please don’t ask me about it. I don’t want to talk about it. I’m okay. You don’t need to fix me.

Also, it was a really big shock to people because you always get the same question, “Oh, do you miss it? Do you miss bread? Do you miss pizza? Do you miss all of these things?” And at this point, I don’t remember what it tastes like. To be perfectly honest, if I’m being really honest with myself, I don’t remember what bread tastes like. I remember what gluten-free bread tastes like, it tastes like rice. It kind of tastes like paste in a way. 

Brianne: It’s sad.

Stuart: It’s sad. I get that taste, it’s not fluffy. But…

Brianne: But I don’t miss being itchy all the time. I don’t miss scratching my skin off. There is nothing I like enough that I like it more than having skin.

Stuart: Exactly, and that’s the thing I have to explain to people. I’m so happy you said that, it’s true. I don’t miss so much more in my life, and I’m so happy that I am able to not have those things, that not having a croissant or not having an extra-large pizza or garlic bread that’s real to myself, I don’t give a shit. Not having to tell a cab driver to stop the cab so I can throw up stomach acid and bile on the street in front of. Or being debilitatingly… cramping so much or having all of these tests and having your hair fall out and being itchy. None of these things are a comparable thing to, “Fuck, I miss pizza.”

Like yeah, fuck, it sucks that it’s a small pizza if  I were to order from an establishment. And yeah, it really sucks that gluten-free food is portion controlled.

Brianne: Or the crust is crispier becuase there’s nothing gummy in it. It’s fine. It just is.

Stuart: And I can make a cauliflower crust if I really want a large pizza.  I can do the work and make a cauliflower crust for myself. It’s fine.

Brianne: My biggest pizza problem right now is that there is a local company that makes frozen pizza that is a large. It’s frozen so it’s not cut, but basically it cuts into eight full slices and it’s called Against the Grain I think, and so it’s grain free. So it’s probably tapioca and whatever kind of things go into gluten-free things and it is so good. But I always eat my entire half and it’s too much pizza. So that’s my problem right now.

Stuart: Well, I think that’s really indicative of someone who doesn’t have the ability to order it easily is when you actually get that option you’re going to eat the whole 12 slices. It’s gluten free, I can do it!

Brianne: Because we don’t get it very often.

Stuart: No and that’s the thing. When people who are not gluten free or don’t have allergies or anything like that, and they order pizza and they call it a treat, it’s not really a treat. They can get it all the time. But for us, getting one that isn’t a small six-slice pizza, one that has toppings on it, with a good quality crust. You’re like, “Oh my god, this is never going to happen again.” And you eat it all down.

But I also find it interesting that people take on that upset that I don’t have. The natural reaction when people actually sit down and talk to you about your dietary restrictions, their immediate reaction always is, “I’m so sorry. Are you okay?” And you’re like, “I’m good.” 

Brianne: “I couldn’t live that.”

Stuart: “I couldn’t live that way. I could never give up bread.” You talk to me when you’ve been itching yourself for seven years and cutting yourself. You talk to me then, because I can tell you right now, you can give it up.

Brianne: It will be really easy, actually.

Stuart: Or, “I just love beer so much.” Great, I don’t, and I can’t have it so… I’m not missing it.

Brianne: Yeah, you don’t understand the choice.

Stuart: That’s being celiac in a nutshell, other people’s problems with it.

Brianne: Thank you, thank you for sharing your celiac journey with me.

[guitar riff]

Thank you for listening to the fourth episode of No End In Sight! I’ve got a bunch of great stories lined up for future episodes, so make sure you subscribe in iTunes, Google Play, or wherever you get your podcasts.

If you want to commiserate with me on twitter about navigating dietary restrictions, you can always find me @bennessb. And if you want to share your story with me, just click my bio link there to schedule an interview. I would absolutely love to hear from you!

I also recently started a Facebook Group called Chronic Hustlers, for people living with chronic conditions who are self employed. So if you’re freelancing or running an etsy shop or managing your own fortune 500 company, I’d love it if you joined!

Last thing:

This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. For me, cross stitch is a perfect way to occupy my mind and my eyeballs during flares when I mostly watch long tv marathons. I just released my fall pattern collection, and I’d love it if you checked us out at digitalartisanal.com

Thanks for listening!