Tag Archives: doctors

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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On time management

To-do lists are great. In fact, 96 percent of people who keep them say their lives are better with to-do lists. (Go figure.) I think I’m part of that 96 percent, but I’m certainly among the 50 percent who write down tasks they’ve already done just to be able to cross them off. I can’t help it; it’s thrilling.

Herewith, then, my most recent list.

Today I:

checked2Looked up my latest symptoms on WebMD

checked2Learned more than I remotely wanted to know about “pulsatile tinnitus

checked2Cross-examined self for evidence of hypochondria

checked2Decided symptoms actually exist

checked2Complained about symptoms

checked2Blogged about symptoms

checked2Tweeted about symptoms

checked2Googled autoimmune diseases associated with celiac diseases

checked2Remembered a few other symptoms and Googled those, too

checked2Tried to determine whether my hair is thinning

checked2Decided it’s too soon to tell

checked2Worried anyway

checked2Searched insurance database for PCP in my new neighborhood

checked2Got discouraged with system and switched to Google

checked2Bemoaned lack of reliable Yelplike system for finding new doctors

checked2Got discouraged again and gave up for the day

Tomorrow I’ll:

unchecked box

Actually do something about it.

Despite appearances, this post was not sponsored by Google. Do you spend more hours Googling things than solving them? If not, how do you manage your time (and self-care)? Do you keep a to-do list? Check anything good off lately?

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No one knows anything about celiac disease. Do you care?

It’s September 13th, so let’s talk celiac awareness.

On second thought, I’ve already talked enough about celiac awareness. So let’s skip the talking and just draw it.

Currently, celiac awareness looks something like this:

true things about celiac vs things the public thinks are true - venn diagram

Lots of people think they know a lot about celiac disease. When you say you have it, they nod knowingly, and you feel warm and understood and accepted and then—BAM—they hit you with, “It’s like lactose intolerance, right?”

The hopeless among us feel we haven’t made much progress in this regard. To them, ’tis the best of times and the worst of times: the age of gluten-free product development, but the age of celiac disease ignorance. As proof, they point to a Google Trends graph (below) illustrating the difference between growing interest in “gluten free” and static interest in “celiac disease.”

Google Trends: searches for gluten free and celiac disease

It’s…not a pretty picture. But, if I may remind you, Google has not existed forever (I know, it shocks me, too). The graph captures data only from 2006ish on. And all the anecdotal evidence I’ve heard tells me that, before then, celiac awareness was even worse.

Twenty or thirty years ago, for example, the original diagram may have looked more like this:

celiac disease awareness venn diagram - past public perception


Or even, maybe, like this:

 

celiac disease awareness venn diagram - ignorance

I mean, we’re talking the banana diet, and the widespread belief—by doctors!—that one can “grow out of” celiac disease. People used to know NOTHING! Now, at least they know celiac disease is a gluten allergy. (Wait…hang on…is that…?)

Sure, you still hear stupid things said about celiac disease. And, if you’re anything like me, it makes your blood boil. In the interest of our collective blood pressure, though, I suggest that we calm down. We can’t get worked up over every instance of ignorance, or we’d never have time for anything else.

Let’s ask ourselves: In the end, does the general public’s knowledge really matter, as long as the folks involved know what they need to know? Maybe not.

Still…those folks have some awareness issues, too.

On good days I think we’re here:

current understanding of celiac disease by doctors, patients, researchers


…but on bad days I think it’s more like:

celiac disease awareness not shared by everyone equally

…with chefs and waiters off in their own little galaxy far, far away, where high temperatures cook off all the gluten and just a little can’t possibly hurt.

I don’t mean to diss doctors, or researchers, or other people with celiac disease (though we all have our brain-fog moments). I don’t even really mean to diss restaurateurs. I just know that it’s hard to keep up with everything there is to know about this disease. It’s only just beginning to be well researched, and misinformation gets picked up and passed on in endless games of telephone with no winners.

Plus, it’s hard—for all of us—to understand precisely where others are coming from. Our personal experience walls us away. Even other people with celiac disease don’t necessarily get me, and vice versa. There’s so much variation in this disease; there are so many unknowns.

On really bad days, I feel completely alone.

feeling lonely with celiac disease or on gluten-free diet

Feelings aside, though, I’m not in fact alone. I have my family, friends, and colleagues who have worked to raise their own celiac awareness; my whip-smart, fellow celiac sister; my doctor at the Columbia University Celiac Disease Center; and, of course, all of you in the celiac/gluten-free online community.

I’m not alone, and you’re not alone, either—at the very least because you have me. And if you and I keep on standing up for ourselves, speaking the truth, and supporting each other, then one day—I’m confident—we’ll end up with this:

a celiac-aware world

I’ll see you there.

Happy National Celiac Awareness Day, y’all. I hope everyone you meet today knows the difference between “gluten-free” and “vegan,” and that you don’t feel alone for a moment. If you’re non-celiac gluten-sensitive or have allergies, other food restrictions, or other invisible illnesses, know that my support extends to you, too. 

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What do you say to celiac disease ignorance?

Do you speak up when someone says something incorrect about gluten sensitivity or celiac disease? (This, by the way, could almost be a question on my celiac disease personality quiz. If you haven’t yet, try it and let me know your result for a chance to win free tickets to or a swag bag from the New York/New Jersey GFAF Expo.)

I generally do. I don’t like the idea of untruths being spread, and I feel party to it if I hold my tongue, especially when I have a personal connection to the subject.

Sometimes, I’m the one who turns out to be wrong. Case in point: last night, I learned that my parents mash their potatoes with an electric mixer, not by hand, as I had been vehemently insisting to my sister. But even then, I don’t usually regret speaking my mind. A little friendly debate is fun.

mashing potatoes with electric mixer

I still think it’s better to hand-mash. Sorry, Mom and Dad.
Photo © Robyn Anderson | Flickr

However, when the other person also feels personally connected to the subject, and isn’t my sister, and we aren’t discussing culinary technique, things can get sticky. A Google search isn’t always sufficient evidence to win such debates, which may escalate into real confrontations.

So, under such circumstances, I sometimes just back off. For example:

Scenario #1: The Fellow Patient

A few months ago, in the waiting room at my doctor’s office, I got to talking with an older gentleman who had been diagnosed for some time.

When I asked how he felt, he shook his head. “Still sick,” he said. “I think I have a parasite.”

I was sympathetic. “I’m not feeling better yet, either.”

“And you’re sticking to the diet 100 percent?” he asked.

“Of course,” I replied.

“You don’t eat out?”

“No,” I replied.

100 percent?” he repeated.

“Yes,” I assured him. “100 percent.”

“Wow,” he said. “I don’t. It’s too hard.”

Seriously?

I wanted to say, “Huh. Maybe you don’t feel sick because you have a parasite. Maybe you just aren’t doing the one thing that is known to cure the disease you have.”

But I hardly knew the guy, and he was many years my elder. Plus, he was about to go in to see the doctor and, hopefully, be told the same thing by her (with better bedside manner).

I might have looked surprised, but otherwise, I kept my thoughts to myself. When I stood, I told him to get well soon.

*

Scenario #2: The Family Member of a Patient

At a barbecue to which I had dutifully brought my own gluten-free three-bean salad, I started talking to some of the other attendees about celiac disease.

One of them said, “My aunt had that…”

I nodded.

“…but she grew out of it,” my interlocutor concluded.

My nod turned sideways. “That’s not actually possible,” I said, slowly.

“Yes, it is. She was gluten-free when she was a baby but now she doesn’t have it anymore.”

“I’m pretty sure you can’t grow out of it…” (By now, I’d already lost: in order to maintain appropriate backyard conversational levity, I was qualifying my response, playing nice, pretending I didn’t know beyond a shadow of a doubt that you can’t “grow out of it.”)

“Yes, you can.” She was as vehement as though we were discussing her own GI tract. “She did.”

I argued a bit more, then shrugged. “Okay,” I acquiesced. “Maybe you’re right.”

I let the conversation turn to other things. I ate my salad.

I moved on.

But did I really? Clearly I’m still thinking about it—about both of the conversations, wondering if I should have spoken up. Maybe I could have dammed one small stream of misinformation, if only I had thought of the right thing to say.

Instead, I reverted to a certain mode of sociability, one I’m not even particularly fond of, whose principles are:

  1. one doesn’t act like a know-it-all
  2. one doesn’t harangue one’s conversation partners
  3. one doesn’t call another’s bluff.

Was this cowardice on my part? Laziness? Did standing aside make me an accessory to the “crime” of spreading ignorance?

Or was it appropriate to just let it go? Am I, after all, responsible for educating people? Even people who aren’t prepared to accept my advice? Don’t I reflect better on myself and the general celiac population by not beating people over the head with my supposed superior knowledge? Don’t I seem less uptight, less nitpicky, less of all those undesirable qualities with which we are too often associated?

I don’t know. I’ve thought about it and thought about it, and, for once, I just don’t know.

What would you have said in these situations? Have you had similar experiences? How did you respond? 

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