INTERVIEW BASED LOOK AT THE SOCIAL AND LIFESTYLE EFFECTS OF CELIAC DISEASE (CH4)

Many believe that diagnosis of celiac disease is the end of a health crisis journey; however, for most people with celiac disease, diagnosis is just the beginning. From having to learn what foods are celiac safe (which is a larger task than just looking for gluten free labeling) to the impact of celiac disease on one’s social life to continually getting sick from cross contamination no matter how hard on tries, celiac disease affects all parts of one’s life. The impact that celiac disease has on our lives reaches far beyond changing our diet and living a strict gluten free lifestyle. The impact of celiac disease affects the whole scope of our life’s journeys.

One major impact of celiac disease is the way in which we navigate our social connections. One of the participants of my celiac questionnaire when asked, “Did your celiac diagnosis prevent you from participating in social activities immediately after diagnosis?” responded by saying, “Yes sometimes we would skip food related events just to avoid the issue” (5M-S). Another responded by saying, “Maybe not prevent, but certainly altered the way I participated” (3K-C). People with celiac disease have to navigate social situations with care. When presented with people who do not understand their situation, those with celiac disease can either avoid or feel frustrated. When asked to, “Describe how celiac disease currently affects your personal and familial relationships,” one respondent stated, “Not all of my friends are very understanding and I try to educate the people close to me so they better understand” (4-L). Another participant stated, “I have a whole group of family members that have not been understanding about my celiac, and instead of supporting me have attacked me. I had to cut ties with a lot of family members, because of how they treated me” (5M-S). Celiac disease can cause disruption in an individual’s social fabric. Another respondent when asked if any friends or family members were detrimental or unsupportive of their experience with celiac stated, “The only discrimination I faced was in the workplace” (4-LJ). The ways in which celiac disease affects a person are often far reaching within the web of their life.

Those with a close loved one with celiac disease know the impact and the ways it affects social situations, gatherings and eating out. Participants in my friends and family questionnaire described what it is like going out to eat with their loved one with celiac disease, one respondent stated, “Most of the restaurants that we try out she gets a little sick from… We do a lot of at home cooking” (1- TW). This respondents experience is that his loved one despite ordering gluten free food and taking precautions found that most restaurant meals made her sick. Another respondent when asked the same question stated,” We almost never did (went to restaurants) at some point due to how dangerous it was. There was a small selection of places that were safe, we didn’t get to eat much variety unless she decided not to eat anything (thanks, mom)” (2-MS). Additionally one respondent stated, “We have to be careful regarding going out to eat. It’s very frustrating that restaurants don’t’ seem to be aware of such a large condition” (3-PB). All three respondents indicated that restaurants often are danger zones for people with celiac disease. People with celiac disease often have to avoid eating out or they have to feel as though they are “sitting out” by not ordering food when everyone else is enjoying a meal at a restaurant. Having to cook meals at home isolates those with celiac disease from the important communion of eating with loved ones.

While many people with celiac disease still live successful lives, the impact is of their illness is a daily battle. As I looked through my Facebook feeds one day, I ran across an entry of friend of mine diagnosed with Celiac disease in high school. He has dealt with the consequences of celiac disease for about 15 years. This friend is actually a child of another friend, so I watched him grown up. In his adulthood, he and I developed a special friendship based on the shared experiences of childhood trauma and celiac disease. So that he remains anonymous, I will refer to him by the alternative name, Larson. Larson’s experience is a perfect example of the way in which the consequences of having celiac disease are far reaching. His post (used with permission) read:

I was a straight A student all of my life. I was in a private college prep school on my way to basically any college I wanted. Eyed Georgia Tech to become an engineer. Wealthy distant family member left me 100,000 as a college fund. I was set to make it. My Celiac hit. I had to drop out of school. Was homebound for 2 years literally unable to leave the bathroom. Lost out on the money spent on that private school. Went to another school, tried to make it, got sick again. Dropped out entirely and my parents spent the rest of my college fund since everything else fell apart. My parents, specifically, my mom, and my health, everything got ripped from me. Everything I own now was built from fucking nothing because my family and health left me with fucking nothing. Now I’m just some sick 30 year old loser with no future that can barely afford to feel themselves, let alone pay back the people I desperately owe for helping me not be homeless. My current existence is humiliating compared to everything I was capable of. I often wish Celiac actually took me out when it had the chance. FB post Larson 2/12/25

When I first read the post, I reached out to be sure that he was ok and to let him know that he is loved, valued, important, and that there is still hope for his life. His post however is one that I can relate to as can many of the 2 to 3 million other people with celiac disease in the United States. The extent of the way in which celiac disease affected Larson’s life was heavily weighted by the ways in which he had to navigate his physical interactions. Not being able to attend school in person affected his family’s finances so greatly that he was unable afford college. Simultaneously, not being able to interact with friends in person affected him emotionally. The consequences of celiac disease and having his life trajectory change into a direction he never wanted has a lasting impact on Larson. Once again, the struggle of living with celiac disease extends beyond diagnosis. I reaching out to Larson to interview him about his life with celiac disease in regards to his Facebook post and the topic of the ways in which celiac disease affects one’s life.

I called Larson on at 3:49 PME on a Sunday afternoon (2/17/25). He was in good spirits and excited to participate in this book project. Larson was excited that his interview helps raise awareness, which will in turn help everyone with celiac disease. I recorded the interview with permission for the sake of retrieving accurate quotes. Informed of the audio recording, Larson agreed that I could use his statements anonymously for this book project and understood that the audio recording itself would not be put on any media sites, etc. You see his comments indicated by “L” and mine by “M.”

In regards to his Facebook post I asked him to expand on his feelings about what happened to him. This was our exchange…

M: …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

Larson clearly expresses his lament for the loss of a life he felt like he was heading towards. He cites how he still wishes he had a career instead of the strong of restaurant jobs he works (see full interview). Celiac disease for Larson, was the inception of change in his life leading him on an irreversible path. In this sense, celiac disease had fully determined his approach to life. He continues discussing the way in which celiac disease affected him by stating…

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.

Larson’s statement calling his experience a spiritual death or ego death is extremely meaningful as it reflects how fully celiac disease can affect the lives of the people who have it. Though all of the trauma and all of the heartbreak that celiac disease can cause, Larson has a mixed outlook toward his situation. He stated…

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.

 Ultimately for Larson he has learned to conquer the feelings of despair that having celiac can cause and views himself as a powerful survivor. We discussed the oddness of feeling both weak and strong simultaneously. He stated…

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

Having celiac disease can make one feel weak but physically but also spiritually and the way in which he or she has to navigate life. The physical consequences of getting sick cannot be understated but the mental consequences of navigating celiac disease at best inspired frustration and at worst desperation. Another person I interviewed, Lisa stated, “Then depression came in about morning food. Like I felt like my freedom was being taken away. I still feel like my freedom is being taken away. I know that is really dramatic. At least, to somebody that doesn’t have celiac, I think they think I’m dramatic…This is completely turned my life upside down” (Lisa Interview)

The mental strain on those with celiac should not be underestimated. Larson and I continued our discussion dealing with the sense of loss that we sometimes feel of a healthy figment version of ourselves that our minds hold dear. We discuss stating…

M: Yeah absolutely. Yes 100%...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?

The sense of loss and the sense that our healthy selves have died and been replaced by this celiac self with an entirely different life from the old self was one of our shared experiences. I shared a bit of my experience with Larson feeling the same way about my life trajectory experiencing a death. This was our discussion on that topic…

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

The helpers as Mr. Fred Rogers so eloquently called them was in fact a redeeming feature for me during the height of the most serious celiac crisis I had ever experienced. Both Larson and I shared positive reflections about even the worst parts of our celiac disease. Our conversation continued as I shared some of the negative aspects of that same time period.

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 tim,e because I was taking in gluten every single day. It was in my thyroid medicine. I didn’t know.

During this time in my life a sense of social isolation washed over me as rejection itself is isolating. My expanded more on my description of my experience at this time…

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 first 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 it’s 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 thing I like to teach people about celiac.

We comforted each other at this point sharing how frustrating it is that people are so uneducated about the seriousness of celiac disease. We also discuss a different form of isolation which is attempting to hide one’s illness from friends and family members. Our discussion of that was as follows…

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

 I continued to share the way in which I also felt like my life experienced a death of the self from my celiac crisis…

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.

This part of my recollection and discussion with Larson highlighted the way in which lack of education about celiac disease and lack of compassion cannot only cause a temporary isolation from friends in family but and isolation that can have lifelong consequences. 

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 textbook. 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.

The comparison of my celiac crisis experience to the 2020 worldwide Covid pandemic is one that I often use as a reference, because it is relatable. The isolation that people felt during the pandemic as patients were quarantined and unable to see their family members even if they were on the brink of death was almost exactly my experience in 2016 from the consequences of celiac disease. However, my isolation was caused solely by a lack of caring and compassion by family members. My other interviewee cited a similar feeling of social isolation. She chose to miss her first Thanksgiving after finding out she has celiac disease. She stated:

I did not go to Thanksgiving with my husband’s family. I couldn’t. I was too scared that I would look like a snob, because I would have to look at the labels of all their stuff that they cooked. I felt like they would think that I was ungrateful so I just didn’t go. It was a lot of little things like that. It was very hard to acclimate to being social again or having the guts to even mention my disease to a restaurant. That kind of a thing. Very hard. It still is very hard. I cringe because going gluten free a few years ago was somewhat of a fad for people who didn’t have this disease. They have kind of ruined it for those of us that actually have to have it because I think restaurants don’t take it seriously sometimes. They think we are just trying to lose weight or whatever. I don’t know…But yeah, it’s been a struggle, but the transition itself is a lot better, because my mental state is a lot better, I guess. I think it was a process of mentally figuring it all out.

Struggling with people who doubt the severity of celiac disease as well as the internal struggle of not wanting to seem like a burden, is a common experience of those with celiac disease. Larson and I continued our conversation about social isolation as I explained my expereince…

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.

Despite the painfulness in knowing that an experience with celiac disease can cause its own form of ego death along with the life trajectory that ego holds dear, the commonality of our experience gave each of us comfort during our conversation. We touched more on the isolation that Larson felt immediately after his diagnosis when he was completely homebound and primarily bathroom bound. After discussion of his former trajectory of engineering (refer to the transcription of the full interview), we talked about his initial diagnosis. Larson discussed the way he was completely isolated from all social activities even within his own home as a 15 year old. He stated…

L: …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.

The consequences of dealing with the two year process of healing from the damage done by celiac disease were so great that Larson was isolated in the bathroom away from his family living under the same roof as him. He continued with his discussion of the isolation he felt by stating…

L: So It (online forums) was 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.

The psychological trauma of being isolated and not being able to socialize during a time in which a person often needs the most comfort and support greatly weighed on Larson during his more formative years. Celiac disease can often seem like a silent disease, but it is often that people who suffer have to do so in private because extended hours in the bathroom is the nature of the disease. Larson expanded on his experience during our interview stating…

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. It 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.

Both Larson and I felt solace in sharing our experiences of the isolation we felt due to our experience with celiac disease. In the essay ‘The invisible Enemy:’ Disability, loneliness and isolation,” published in Disability and Society, (2018) by Stephen J MacDonald, Lesley Deacon, Jackie Nixon, Abisope Akintola, Anna Gillingham, Jacqueline Kent, Gillian Ellis, Debbie Mathews, Abolaji Ismail, Sylvia Sullivan, Samouka Dore & Liz Highmore, the quantitative data indicated that disability promoted more isolation. As stated in the essay, “This study presents data suggesting that disabled people are more likely to experience social isolation and emotional loneliness that the nondisabled population.”  After rigorously methodological research, the study concluded that the of the participant population in the UK, “This data revealed that 26.4% of the disabled population described being subjected to social isolation, and a staggering 52% experienced feelings of emotional loneliness”. https://sure.sunderland.ac.uk/id/eprint/10594/3/The%20Invisible%20Enemy%20Edited%20AAM%20(1).pdf  The sense of solitude and loneliness felt with people with celiac falls in line with the sense of social isolation and emotional loneliness that is sited in the Sunderland study.

There was a light at the end of the tunnel in our discussion because amidst the loneliness and isolation that Larson felt during the height of his illness, he found a social outlet in the online forums and fansites he used for socialization. Expanding on his previous statement about his thankfulness for online communities we our discussion followed…

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 that as at least one way to socially interact?

L: I definitely agree because that was a thought I had was that what if that happened like in the 70s and I 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.

This part of our discussion highlights the way in which having an online community saved Larson from the extreme symptoms of his PTSD. Not only did the isolation from celiac induce PTSD but symptoms of psychosis as well. He extreme nature of the psychological symptoms caused by the lack of socialization caused by the debilitating symptoms (namely severe diarrhea) cannot be understated. However, the symptoms abided greatly with the use of the social media accounts and online forums. Using online communities as an aid to abate isolation was a necessary tool to the emotional recovery process for Larson. We continued discussing the social needs of those with celiac disease as well as humans as a whole…

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.

 The above statement hit home for both of us as it emphasized the fact that people need socialization and support the most when they are suffering from a hardship or illness. In an NIH study dealing with cancer patients (published in the National Library of Medicine) entitled “Model of Social Support for Patients Treated for Cancer” found that patients that felt they had a strong social support experienced less anxiety and depression over their illness and had a more positive view of their cancer journey. They felt supported and were more open and positive to their treatment options resulting in better outcomes. https://pmc.ncbi.nlm.nih.gov/articles/PMC8507879/ Those with illness whether it be chronic or episodic benefit from having a strong social fabric. Our discussion about online friends continued…

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.

Despite the fact that those without celiac disease cannot necessarily relate the amount of pain that we suffer from, the impact lightens with the social interactions we have with friends and family. The pain of celiac disease however, is an isolating factor in and of itself as those in pain deal with their own pain alone. However, I believe that when people with celiac disease have a conversation about the pain they experience they find a great amount of comfort. We summarized the feeling of connectedness that we feel having this conversation as with the following exchange…

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…

Larson brought up a meme that perfectly describes the balance and shifting feeling of dealing with chronic illnesses like celiac disease when he discussed a meme he found…

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

The meme discusses how we often build up internal strength as people suffering from celiac disease and carry that for as long as we can manage. However ultimately, we all experience the loss of this fortitude in moments of extreme frustration caused by the ongoing turmoil a lifelong illness creates.

We continued our discussion of Larson’s social network by moving toward his current group of friends.

M: … 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.

 The positive aspect of Larson’s experience with friends that are willing to learn about celiac disease was discussed more as follows…

M: … 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.

 As reflected in Larson’s statement, people who are willing to learn more about their loved ones with celiac disease, help support them physically and emotionally. There is a sense of empowerment felt by a person with celiac disease when someone is willing to learn more for their loved one or friend. When people with celiac disease educate those around them, it causes a domino effect spreading cultural awareness about the disease. Educating those that friends and family members helps keep the individual with celiac disease safe from sources of contamination.

Participants in my Friends and Family Members survey expressed how little they knew about celiac disease before knowing their loved one. One participant stated,

It really does amaze me at how often and easily she can get contaminated. But if you are a good cook there is really nothing off the table just with alternative recipes. I think the biggest shock was when I thought about the pita bread. Like the pita bread dust could be enough, and I was like wow that is miniscule. (4-NC)

Another stated…

I knew a little about celiac disease before. I didn’t know one could be so sensitive, a humbling experience. It destroys your soul, little by little. You feel just terrible, because you feel helpless. There really is not much you can do. Even if you go to the hospital, they will just tell you to wait it out, unless you have breathing or heart problems or something like that. It’s really not worth the trip to the hospital or clinic. You just have to wait it out and just watch your people be in pain and it sucks. (3-TW)

Finally another participant stated…

Without a doubt, it has changed my eating habits for the better, I’d say. I find myself being better educated about the condition, aware that “gluten free” on a label doesn’t always mean much.  Knowing my friend and her family has made me infinitely more aware of what goes into our food production as well as preparation. Cross contamination is so common. I had no idea. (3-PB)

The awareness of the sensitivity level to cross contamination was the number one way that friends and family survey participants felt they had learned from knowing someone with celiac disease. All of the participants cited their unawareness of how sensitive and how ill one can get from less than a crumb of gluten on food ingested by someone with celiac disease. They all also felt they had learned more about the disease. Disease advocacy and self-representation by those with celiac disease is not only practical in the sense that it can help keep food safe, but also it creates a sense of support by those around them. Since the social aspects of the celiac experience are so prominently part of the journey, it is imperative that people that have a loved one commit to education themselves and others about the disease. Listening to their love one express frustration about living with celiac goes a long way toward their love one’s outlook on life. Dealing with celiac disease will always present its challenges, and as Larson and I explored in our conversation, it influences one’s life irreparably. However, people with celiac often find, as Larson and I do, that they have an inner sense of strength from their resiliency of dealing with life in the face of the challenges that celiac disease creates. To overcome a crisis and to thrive helps those of us with celiac disease continue despite hardship and share our experiences to encourage others in the celiac community. Larson said it best when during the interview he stated,”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.” Living an innovative life and finding creative ways to feel normal with celiac disease is living successfully. This conversation was eye opening and informative for us both. If you have celiac disease and would like to participate in an interview, please contact me via theceliacexperience@gmail.com