Hi, I'm Caira, and I have type 1 diabetes and Graves' disease.
These are autoimmune diseases that affect the pancreas and thyroid, respectively, and they like to travel together. It's generally unclear what causes autoimmune diseases (genetics! environmental factors! infections!), but once you have one, it's more common to develop another.
Earlier this year, a doctor suggested that I cut gluten out of my diet to help improve some ongoing symptoms these two conditions didn't necessarily explain.
So what is gluten, and why can't I eat a meal without hearing about it?
Gluten is the collective name for specific proteins found in wheat and other grains. Its ubiquity in mainstream health conversations has risen from the popularity of its absence in mainstream diets.
Dr. Peter H.R. Green, director of the Celiac Disease Center at Columbia University, explained that a lot of people without celiac are advised to go on a gluten-free diet to reduce inflammation and risk of autoimmunity, or reduce a variety of symptoms, though there is no scientific evidence it will actually help. (He explained this to me, in fact, when I became his patient, and after I'd already begun the diet.)
For people with celiac disease, a gluten-free diet is non-negotiable.
Celiac disease is an autoimmune disorder where the small intestine cannot tolerate gluten ingestion. All sorts of painful symptoms and damage to the organ occur if gluten is consumed, so the only way for someone with celiac to live is through a gluten-free diet.
Outside of celiac disease, there's a broad range of how gluten is tolerated by different people.
Truly, for some people, a gluten-free diet changes their life. I just was not one of these people.
Here are the things I learned instead.
1. At first, I felt better.
Particularly in the first few weeks after I eliminated gluten from my diet. Mentally, it was a relief to believe I had something to point to as the Definitive Cause for what ailed me, for the perennially annoying gastrointestinal issues I'd had for years before my autoimmune diagnoses, and for the exhaustion I experienced on a now daily basis.
I also enjoyed a sense of smugness in my newfound use of zucchini noodles and extreme bagel avoidance. (My heart health will go through the roof!) There was something virtuous and calming in the careful restocking of my pantry with gluten-free items. "Behold these bags of almond meal!" I exclaimed with internal pride. "Look at me and my stacks of coconut flour pancakes!"
This novelty lasted six days.
2. Then I felt worse.
Two months into the diet, my vision of walking through fields of farmers markets righteously carting loaves of gluten-free bread had soured. Physically, I felt as mediocre or worse 70% of the time as I had before I'd stopped eating gluten. The idea of doing both work and exercise in a single day was hilarious. If I had gotten to the cause of my symptoms and was actively following protocol, then why didn't I feel better? My blood sugar levels were being managed with insulin, and my thyroid production with antithyroid medication, so it didn't make sense to me that I'd still be feeling wretched from those diseases if they were under relative control. It also didn't make sense that eliminating gluten hadn't resolved the stomach problems I was told it might.
Dr. Murray Orbuch, assistant professor of gastroenterology at the Mt. Sinai School of Medicine in New York, explained, "The fad of blaming gluten for gastrointestinal issues has taken on an unscientific life of its own. The symptoms associated with true celiac disease, where an immunological response to gluten results in gradual damage of the small intestinal lining, are often difficult to distinguish from other conditions that result in similar symptoms. Before someone embarks on a highly restrictive gluten-free diet, it's imperative to confirm that's what's actually going on."
In the months prior to my diabetes diagnosis, I inhaled sugar and carbohydrates to tame the demonic cravings that greeted me each day. I was unknowingly peeing out sugar most of the day (and night) courtesy of my failing pancreas. I didn't exactly understand how I was sick, I just knew that if I didn't eat or drink constantly, then something sinister would happen. So it makes sense that switching into lower carbohydrate mode when I went off gluten gave my pancreas some much-needed rest. This is probably the real reason why I felt better at first on a gluten-free diet: not because I wasn't eating gluten, but because I wasn't giving a failing organ more work to do.
3. Being gluten-free was exhausting, inconvenient, and expensive.
4. I'd spent so much time in diagnostic purgatory with my belly, I was ready to believe gluten was to blame before I'd stopped eating it.
Before I'd even walked into the office of the doctor who suggested I try it. To be clear, this physician was not a quack. I didn't find this advice on Craigslist. I deliberately sought out a health practitioner with a focus in "functional medicine" (aka a doctor whose practice is more holistic or incorporates alternative medicine) because I was frustrated by the lack of diagnosis from traditional medicine.
I'd spent nearly a decade in and out of the gastroenterologist's office with various stomach infections and digestive issues. Even though I had two definitive diagnoses to explain aspects of why I didn't feel well, there were still a few loitering symptoms these conditions didn't explain.
5. There's only so much the body can do to tell you something is wrong, and sometimes it sends out similar signals for different kinds of problems.
6. Once you think gluten is bad for you, it is hard to unthink it.
Even after I was told, "Yes, eat gluten, it's not going to hurt you because we treated the real issue," I hesitated. The well had been poisoned. Was this afternoon headache a random occurrence or BECAUSE OF THE GLUTEN IN MY SANDWICH (certainly never from lack of sleep)? There was this weird psychology of choice at play in seeing lunch options arranged by those that had gluten and those that did not.
But it's problematic to look at gluten itself through a polarizing lens of good or bad. Gluten is a type of protein naturally occurring in a number of healthful diet staples. Whether your body can ingest it properly depends on biology, not on willpower. In the same way I can't decide, "Nah, thanks, I'm not going to take my insulin tonight," someone with celiac disease can't eat a basket a fried chicken without serious bodily consequences.
"A misconception of a gluten-free diet is that you can cheat every now and then," said Orbuch. "If you really have celiac disease, the dietary restrictions are absolute. This is because unlike classical allergic reactions, the response to a dietary indiscretion is not instantaneous and symptoms may not appear for weeks."
7. I really wanted to have what she was having.
Not just a bite of Sally's sandwich, but everything that everyone around me was eating. I didn't want the handful of almonds. (Sorry, almonds.) I wanted the co-worker's birthday doughnuts and to try the snacks my boss brought back from Japan. I wanted to join group birthday dinners without eating beforehand, just in case. I wanted to stop for a slice of pizza.
I simply didn't appreciate how difficult it is to eat outside the box. And because I had to speak openly and often about what I couldn't eat, I got a lot of unsolicited feedback on what I was doing wrong or what I should be doing instead.
There is a lot of joy in the spontaneity of eating, and I longed for the simpler times of being able to put whatever was on the table on my plate.
Those who commit to a gluten-free diet for life (or at least longer than four months like me), whether out of choice or obligation, probably develop an arsenal of go-to meals and snacks. Perhaps the idioms I associate with healthy, lighthearted eaters — "run out for lunch!" "grab a bite!" — manifest in time and reconfigured ways of eating for someone on a different sort of diet. I commend them. But during my time I only felt the heaviness of calculation. Every meal was an assembly, each ingredient accounted for. This, on top of the carb-counting I was already doing for diabetes, was too much. Mealtime became sadtime, quickly.
8. In the end, what I'd really been after was the one thing I couldn't have.
I was just tired of the vagueness. I was tired of hearing "we don't really know." I wanted to feel better. I wanted a hard answer. So when someone suggested, "Maybe it's in your diet," I listened.
"My diet!" I exclaimed. "Yes! I can control my diet."
9. When I learned gluten wasn't at the root of my symptoms, I got really angry at the Gluten-Free Industrial Complex that made me think it was.
10. But in the end, illness changed my life. Not gluten.
Frankly, the day-to-day management of autoimmune disease is boring. Looking at glossy book covers promoting the 86 things I can do to HEAL MYSELF TODAY is much more interesting than the mundane reality of monitoring my blood sugar and giving up booze. Chronic illness is tedious. The constant reconfiguration of what carbohydrates I can eat and where they fall on the glycemic index is a nuisance.
I had my needle stuck on this idea of figuring out what I needed to do to feel better, so that I would never feel unwell again. Ever. I can appreciate my determination here (*sad laugh*) but the reality of my biology is such that this approach leads only to disappointment and ire. I have two autoimmune diseases. There are days that I am not going to feel well, no matter what I'm doing, or how well I'm doing it. There are days I feel powerless, and depleted.
There are also days I forget anything is the matter.
11. I can't eat my way out of these conditions.
I also can't concentrate, blame, deny, spend, ignore, shame, wallow, or StairMaster my way out of them either, though certainly not for lack of trying. (Kidding. I would never try to StairMaster my way out of anything.)
What I can do, every day, and sometimes 167 times a day, is learn and relearn to live with them.
So I'm doing that instead.