Why Does It Feel Like You Have to Be Your Own Doctor?

Should you be your own doctor? (Do you even want to be your own doctor?) A celiac’s stories from the dermatologist, allergist, and (yay) the gynecologist.

Coming at you in the aftermath of a panic-spiral during which there was much Googling and worst-case-scenario-ing of everything that can go wrong with my body.

Hi, it’s me—your friendly neighborhood celiac.

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To date, I’ve only met one other person with celiac disease (other than my dad (Thanks, Dad, for passing on the faulty genes. Love you.)). She was a fellow American I met by chance at a gluten-free perogi restaurant in Wrocław. (In case the stars align and someone with celiac disease who also happens to be visiting Wrocław reads this, the magical restaurant in question is called Manufaktura Bezglutenowa. You’re welcome.)

Celiac disease is an auto-immune disease from which an estimated 1% of the world’s population suffers (Source: National Institute of Diabetes and Digestive and Kidney Diseases).

And ICYMI, it’s not just the hipsters upsetting the Boomers by asking for gluten-free bagels¹ at their local delis; diagnoses of celiac disease are on the rise with incidences increasing year over year by 7.5% for the last several decades (Source: The American Journal of Gastroenterology).

Experts don’t really know why yet.

Don’t worry—this is not a post about celiac disease. It’s a me problem, and I don’t expect other people to care. But if you’d like to learn more about celiac disease (or if you’d just like to add to your internal encyclopedia of random facts to (attempt) to dazzle people at dinner parties), you can begin your Internet research spiral here with 20 Things You Might Not Know About Celiac Disease. (All the cool kids are reading it these days.)

So what’s my point?

I’ve had celiac disease my whole life, but I didn’t get a diagnosis until I was 23—I had to figure it out basically on my own.

For anyone who’s ever spent time worrying about their health, stories like these aren’t unfamiliar.

In fact, an updated 2023 report issued by the U.S. Department of Health and Human Services’s Agency for Healthcare Research and Quality confirmed that ~5.7% of patients receive an incorrect diagnosis.

Now certainly, medicine is not an exact science, and it’s natural that there is a margin of error. Still, it doesn’t make the plight of those who suffer from these incorrect diagnoses any less.

But incorrect diagnoses are only one part of the problem.

Dissecting the problems of life, together. Join the Merry Loners.

It is not the error in diagnosis that grinds my gears so much but the lack of one.

Every since I was a teeny-bopper, I regularly visited the dermatologist. It was pretty much an annual pilgrimage to try to find a solution (or even the proper name) for the rash that has long plagued me.

A solution was never found, though the attempted explanations were aplenty—and often ridiculous.

• “The bumps on your knees? It’s just irritated skin from shaving.”
• “The bumps on your spine? It’s just friction from moving because you’re so thin.”
• “The bumps everywhere and anywhere else? It’s because you’re very fair-skinned. Just put some hydrocortisone cream on it.”

I’ll refrain from regaling the many other symptoms I experienced from childhood to adulthood because:

1. kind of irrelevant
2. gross

I will, however, highlight one other symptom because I find it the appropriate mix of relevant, infuriating, and comical:

For background, one of the more dire consequences of celiac disease (which can then lead to its own litany of negative consequences) is malnutrition. TLDR: If you have celiac disease, your intestines get damaged when you consume gluten (or gluten-contaminated food), which means they can no longer adequately absorb nutrients from the food you eat.

(So despite having the good fortune to have been raised by a mother who cooked three square meals a day every day in our charming house with the white picket fence, I was woefully malnourished as child (which, in hindsight, is quite obvious since I was always so freakishly thin no matter how much food I ate)).

I digress.

This absurd skinniness was always waved away by doctors.

• “You’re a late bloomer.”
• “You’ll have a growth spurt soon.”
• “You just have a fast metabolism.”

All of this seemed fine. Until I was about 21. I told my general practitioner:

I don’t understand. I’m hungry ALL the time. I eat more than everyone else I know. You said I just have a fast metabolism—but I’m not a teenager anymore. I feel like there’s something wrong. Shouldn’t I start gaining weight by now?

The response:

“Oh, lucky you—you’re so tall and thin and can eat whatever you want. You’re like a model!”

…

…

…

(That’s the sound of my eyes rolling back into my head.)

Please consider: My intention is not in any way to villainize the doctors I consulted. I actually liked my general practitioner a lot, and I’m certain they were all trying to help.

But that doesn’t take away from the fact that all my calls for more information were largely cast aside.

A similar experience followed at the gynecologist.

Despite a history of frustrating appointments, I have always retained a lot of confidence in doctors.

I respect their profession. I believe that we rely on them as a society. And I definitely don’t think my rudimentary research online can yield better results than their many years of study.

That’s why I always ask for their help. I just wish it was answered more.

For example, when I needed birth control and my regular gynecologist was booked for awhile, I headed to Planned Parenthood. I wanted to try a different method—one more invasive than the pill I’d previously used. And as I believe anyone would be and/or should be when a physical object is going to be implanted into their body for years on end, I was nervous and wanted to learn more about the insertion, removal, and side effects before proceeding.

How did they help? The bored-looking nurse handed me a couple of brochures and then pretty much immediately asked if I was ready to proceed, even though there had clearly been no more than a few minutes for me to read the brochures and develop any questions.

I’m not going to lie—this annoyed me. But, as I always had, I trusted the medical professional and proceeded. After she inserted the implant, she gave me a little piece of paper telling me when I would need to replace it, which I promptly stashed in my wallet for safekeeping behind my driver’s li