What a Celiac Disease Flare is *Actually* Like
In honor of Celiac Disease Awareness Month, I bring you a first-hand account of living through a flare.
A flare is a very hard thing to describe, and that's why there are a lot of misconceptions about what a flare is truly like to experience. Also, as I preach in every blog post, every person is different and therefore every flare is different. I also want to make it clear that my intention in sharing these things is not for sympathy or to write myself a sob story, all my posts about celiac disease are intended to help others in the same situation and educate other people who may not have any experience with CD.
First of all, what is a flare? Speaking in non-celiac-specific terms, a flare is when a chronic illness is exacerbated for a certain amount of time. This doesn't mean that chronic illnesses are completely non-existent the rest of the time...a flare is just when something triggers symptoms to be especially bad. In celiac disease, flares are most commonly caused by exposure to gluten...but things like excess stress, dramatic changes in diet or exercise, or travel can also cause a flare of symptoms.
Like I said, everyone is different so I can't speak for the whole CD population, but this is what a flare is like for me. When I am accidentally exposed to gluten, most of the time I don't know it right away. I might have a suspicion that the waiter didn't understand me when I explained celiac but I don't usually feel anything until hours or even days later. One of the very first things that happens in my body is a major decline in cognitive function that lasts up to weeks at a time...I start to notice that I am processing much slower, and I formulate ideas/sentences in my head but have a really hard time actually communicating them. If you've ever gotten a text from me while I am in a flare you understand...it literally makes no sense. The most frustrating thing about this situation (we call it brain fog) is you are not able to control it whatsoever. I am consciously aware that I am processing slower and making no sense but I can't just make my mind stop doing that, you know?
This also really affects my mood and can make me very emotionally unstable. When I am in a flare, I could honestly make the bed wrong and cry about it for hours. Side note: that being said, for those of you without CD that are trying to support a patient, never EVER discredit what they are saying or feeling because of a flare. The flare might be making the emotions more noticeable but they are still very real.
Another big symptom of a flare is GI issues. I have major stomach pain that usually keeps me in bed for weeks and most of the time I can only tolerate water, bone broth, and maybe bananas. During serious flares, nausea and vomiting are also huge issues...which lead to dehydration which then leads to all sorts of other things.
My skin also takes a big hit during a flare. I could have super clear skin for months and within a week of exposure to gluten I could be covered head to toe in eczema rashes that I (and I know, I shouldn't do it, I got) end up itching until I bleed.
Also, as crappy as it is, I find this one really interesting...celiac disease causes leaky gut in many cases and when the gut is more permeable, ingested gluten can pass through the stomach lining into the bloodstream. This gives the gluten particles access to every part of the body. For me, this causes a lot of whole-body inflammation and frequent joint pain. In some cases, myself included, gluten can even cross the blood-brain barrier and causes noticeable damage to the brain itself. In short, headaches for days!
The good news is in most cases (refractory celiac disease being the exception), flares come but they also go. I've had flares that last 24 hours and I am in a flare right now that has lasted almost two months, so unfortunately there is no telling what might happen or for how long. I think the best way I've learned to deal with flares is just to be at peace with the fact that my body behaves this way sometimes and stressing about it will only make it worse. I have to allow myself the freedom to rest as much as my body demands without judgment or anger. Also, it's helpful for me to find joy in small things while I'm actively sick. Sometimes we get stuck in this mentality that we can only be happy when we feel healthy, but I want to challenge you to consider that you can feel horrible physically but still experience happiness.
If you are someone who does not have CD but wants to learn about the disease, I hope my lived experiences have contributed to your understanding of our life with the disease. To all my lovely celiac humans, wherever you are in your journey, flare or not, I hope you know you are not alone. You are so deeply loved, not despite your illness but in addition to it.