Welcome to Celiac-Self Care! In this series, we’re exploring the ways in which celiac disease affects quality of life and sharing the self-care strategies that help our Reach Beyond Celiac Ambassadors cope.
In this post, ambassador Christina Heiser chats with ambassador Hayden Bishop. Learn about Hayden’s experience with dermatitis herpetiformis, how they’re navigating new symptoms post-diagnosis, and why they’re letting go of guilt around food.
I was diagnosed in 2018, first with dermatitis herpetiformis (DH), a skin condition associated with celiac disease. I had this really itchy rash that kept coming up on my elbows, my knees, and sometimes even my butt cheeks. But I had just started doing martial arts when the rash started to appear, so I had several dermatologists tell me it was fungal or eczema.
Finally, I insisted that a doctor test a sample and it came back positive for dermatitis herpetiformis. I was traveling when I got the call and they said, “You have celiac disease, you should probably follow up with a GI doctor.” I stopped eating gluten immediately—I didn’t know at the time you need to continue eating gluten until you get an endoscopy.
I waited about three months until I had moved to California to find a GI doctor and get an endoscopy. When they scoped me, I was still at the highest level of inflammation—but besides the rash, I didn’t really think I had any symptoms.
As I started to become more aware, I realized I was always experiencing some gut symptoms that I wasn’t really acknowledging or that I was minimizing. I would get nauseous or bloated after eating, but I thought that was normal or that it happened to everyone.
There were also a handful of times throughout my life where I couldn’t get out of the bed for the day, or I went to the hospital because I thought my appendix was going to burst. The doctors could never figure out what it was, and then it would just get better. I didn’t connect those symptoms until after getting my celiac disease diagnosis.
Before diagnosis, I felt kind of ashamed of it. For one, I thought it could be fungal—and with Brazilian jiu-jitsu, you’re rubbing your body all over someone else’s. I thought, “Oh, this is dirty, I could give that to someone else.”
I’m also an actor. One time I was on a commercial set and the makeup artist put me in a short sleeve T-shirt when I had the rash on my elbows. I remember the makeup artist asking, “Can I put some makeup on it?” because it was really red. So I was embarrassed by that.
I imagine anyone who has some sort of skin rash, no matter if it’s DH or not, feels like other people think you’re not taking care of your hygiene in some way.
The rash resolved itself really quickly—within three days, it was significantly less. What’s interesting is that throughout my journey, the rashes never really came back. Instead, all the symptoms I deal with now are things I never had before my diagnosis.
It’s been a rollercoaster. I used to minimize the symptoms—I wasn’t really acknowledging how bad they were. I think some symptoms are easier to acknowledge than others.
Like certain GI symptoms—when I get bloated in the evenings, there’s no denying it looks like I’m three months pregnant. But when I get brain fog and feel tired, I say, “Well, everyone feels tired.”
I’ve now been diagnosed with migraines, but it took me two years before I even saw a neurologist to talk about it. I was minimizing it because it’s not something you can see or really prove. I was like, “Maybe I’m making it out to be worse than it is.”
Some days, I feel like it makes me stronger, and then other days, I feel the opposite. I’ll have a couple of months where my symptoms are more intense and then a couple of months where they lessen, and I think, “Oh, I’m doing something right,” and then they’ll go back to being more intense again.
Mentally, it feels like you’re being thrown for a loop. But I’ve now come to realize it’s not anything I’m doing that causes the symptoms to get worse or be more or less intense. That’s been really helpful for my mental health.
Before, I used to beat myself up if I started to feel worse. I’d say, “Oh, I must’ve eaten something or done something wrong.” Now, I’m like, “No, it’s just my body cycling through or having to process something—but I’m not doing this to myself.”
I think the most surprising thing is how much the symptoms are still present, even while on a strict gluten-free diet. Often, the way it’s portrayed online and in conversation is that the road to getting diagnosed is hard and then once you’re diagnosed, you feel a lot better. That’s just not the case for me.
It was really hard to accept the symptoms or even acknowledge them because of my expectations that they were going to go away after I was diagnosed. I thought I’d be able to get into a routine, but with every new symptom, it’s learning a different way to manage it.
Before being diagnosed, I got really into being “healthy,” like what the media portrays or what the majority of people think is healthy—this idea of working out and eating whole, non-processed foods. I used to have the mentality that I should only eat dessert on the weekends, and I should limit my sugar or carbs or do this to feel better. But I’ve had to let go of that thinking. I’ve had to tell myself, “What’s healthy or what feels good for my body isn’t necessarily what feels good for other people’s bodies.” If I want to eat chocolate every day, I eat chocolate every day.
I also don’t like to set portion control. If I’m feeling hungry and I want to eat the one brand of biscuits I can have, I’m not going to feel guilty, because this is what makes me feel good physically.
I think it’s really important to only talk to people who are knowledgeable and who are living the way you want to live. When I was first diagnosed, I would talk to anyone. Sometimes, I would meet people with celiac disease who weren’t worried about cross-contact, or I’d talk to people who said they’d eat a little bit of gluten because it was helping them build up a tolerance. That’s very harmful. So I think the most helpful thing is to connect with people who are knowledgeable about celiac disease.