Hair today, gone tomorrow: hair loss, celiac disease, and a WebMD-style battle of the sexes

I’ve been posting a lot of serious stuff lately, so I thought I’d take a break to talk about something fun: hair loss.

I’ve always had thick hair. Like every other girl and probably plenty of guys, I’ve always wished it were different. When it was stick-straight, I longed for curls. When by the magic of hormones it went curly, I started straightening it. But never have I wished it were thinner.

Unfortunately, wishes don’t have much to do with it.

A couple of months ago, it became clear: I was shedding. Not a normal amount, but an “Is there even any left?” amount.

Okay, not quite this bad. Photo © boris drenec | Flickr

Okay, it was never quite this bad.
Photo © boris drenec | Flickr

“Your hair is everywhere,” Althea said. And she was right. It was on my pillow, my sweaters, my jacket, my desk and chair at work. It coated the floor like carpet and landed in most dishes of food I touched (you can gag, it’s okay).

According to the American Academy of Dermatology, everyone bids farewell to 50 to 100 strands of hair over the course of an average day. I’m pretty sure that’s how many I remove from the shower drain each morning.

Hair loss—like bloating—is associated with just about everything, including normal aging. And it’s not just for men; 40 percent of women show visible signs of hair thinning by age 40. And, like bloating, it’s upsetting.

In a rare departure from its usual brisk style, WebMD explains, of women:

Unfortunately, society has forced women to suffer in silence. It is considered far more acceptable for men to go through the same hair loss process. . . . the psychological damage caused by hair loss and feeling unattractive can be just as devastating as any serious disease, and in fact, can take an emotional toll that directly affects physical health.

and, of men:

Contrary to societal belief, most men who suffer from male pattern baldness are extremely unhappy with their situation and would do anything to change it. Hair loss affects every aspect of their life. It affects interpersonal relationships as well as their professional life. It is not uncommon for men to change their career paths because of hair loss.

Am I the only one who imagines these articles were written by one sad balding female staffer and one sad balding male staffer without consulting one another?

Anyway. When my problem showed no signs of going away on its own, I got a doctor’s appointment and, from there, a dermatology referral. The dermatologist took a two-second look at my hair, plucked out a strand, and started talking about “telogen effluvium” and “androgenic alopecia.” Finally, my ears caught a word I knew: “Rogaine.” Oh my god.

“So…it’s definitely falling out?”

“Yup!” the doctor replied, cheerfully, for all the world as if he’d never read that WebMD article about how distressing this was for me.

He went on: “Diseases sometimes accelerate stuff like this. You probably would have lost it anyway, but it’s happening four or five decades early because of celiac disease.”

I nodded, wide-eyed, and wailed internally, My hair, my beautiful hair!

Meanwhile, the good doctor concluded with a flourish: “Diseases suck!”

Got that right.

He wasn’t able to say why this would have developed months after I went gluten-free, or even if my “alopecia, unspecified” was definitely linked to celiac. He was able to give me a shampoo prescription, a few blood tests, and a “See me in six months.”

After that, there wasn’t much to do except pick up my (exorbitantly priced) shampoo, console myself with candy corn, take my new favorite doc’s advice, and wait. But I did ignore one piece of his guidance. He said cutting my hair wouldn’t help, but I’d had enough of finding it everywhere. So I marched myself into the salon, told the stylist to take it all off, and emerged with a new ‘do.

So it's still falling out. But at least shorter pieces of it are falling out.

It’s still falling out. But at least shorter pieces of it are falling out.

Having taken some decisive action, I immediately felt less “psychologically damaged.” 

A couple days later, the doctor’s receptionist called. “Your ferritin levels are low,” she said. “You need to take iron.”

Though they aren’t so low as to be out of the reference (normal) range, it seems they are low enough to be of dermatological concern. Some kind of nonstandard iron deficiency might also—I’m conjecturing, i.e., making this up—explain why I’ve never gotten that mystical gluten-free energy boost.

But who knows? I ordered my 324 mgs, and I’ll let you know in six months.

Till then, I’ll be rocking my new lack of hair. It’s a boon, really, because it opens the door to a whole new world of Halloween costumes, like this one:

Happy Halloween eve! May you receive only treats, no mean dermatological tricks.

Have you ever experienced hair loss from celiac, or from something else? How do you cope? And what are you dressing up as for Halloween tomorrow?

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20 thoughts on “Hair today, gone tomorrow: hair loss, celiac disease, and a WebMD-style battle of the sexes

  1. addercatter says:

    It looks great on you! =^..^=

  2. Amanda says:

    i had really bad hair loss back in 2007 and 2008. i did have really low iron at the time but they didn’t specifically say that it was the cause. i went to the dermatologist too and they biopsied my scalp but never really told me what was wrong. eventually it stopped, but it was extremely distressing when it was happening. i hope it stops for you soon too!

    • Molly says:

      I’m glad yours stopped! My dermatologist didn’t biopsy my scalp or anything, and I was pretty peeved that he didn’t seem to be considering anything beyond the “It’s just happening because of celiac” hypothesis. Oh well. I’m keeping my (not-yet-hairless) head up.

  3. Casey says:

    You look so pretty with short hair! Work it, girl! I experienced hair loss (and still do to some extent) and I’m definitely blaming it on celiac disease. What happened to brushing my hair and having more hairs on my head than in the brush? I hope that the medicine helps and that all of us celiac baldies crop up with long, luscious locks 🙂

  4. Try some silica along w that iron, and you totally rock the short hair!

  5. Your new do looks great! And love the costume.

    “Diseases suck” – totally true but kind of annoying to be told that in a perky manner. However, pretty awesome for fiction, or in this case a blog post!

    • Molly says:

      Thanks, Dana! And yes, it never ceases to amaze me what a wealth of creative material my doctors provide me with. They should all give up on their profession and get into improv.

  6. Your hair looks FANTASTIC! And… I haven’t had hair that short since the 3rd grade when on a whim I had ti all cut off… and the stylist cried.

  7. rachelmeeks says:

    Hey, welcome to the short hair club! Mine’s not falling out or anything, but with chronic pain the upkeep of long hair became too much. I like it, though, personally. Very punky. And what’s more punk than bald? I vote you make the transition via mohawk. (I hope you find this comment funny and not suicide-inducing! Love you!)

  8. […] written before about such light, possibly celiac-related topics as bloating and hair loss. After several low-sleep months, I felt it was time to address this new one. I’ve tried […]

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  11. Chrys says:

    Do you have an update on your hair loss journey? I know this post is old so I’m curious if it stopped and if you ever found the cause. I too have Celiac and am experiencing extreme hair loss.

    • Molly says:

      Yeah, in the end my doctor told me my iron was on the low side, and after I started taking high-dose iron supplements my hair stopped falling out. Maybe look into that! Sorry to hear you’re having this happen too.

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