Category Archives: Breadcrumbs in the wilderness

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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I have 100 blog posts and 100% awesome readers. Thank you.

This is my 100th post! In honor, I thought about listing 100 things that make gluten-free life worth living—but I couldn’t narrow it down. I considered 100 things worse than celiac disease—but after jotting down “cancer, earthquakes, and loneliness,” I decided it was a bit of a downer. Instead of listing, I wound up reminiscing.

When I penned my original farewell to gluten, I wasn’t sure where this blog would go. I wondered whether I’d have enough to say, or stay interested enough to keep it up. There have been times when I’ve slowed down, and times when I’ve thought about quitting. But something always draws my fingers back to the keyboard.

hands on computer keyboard

If only something also drew me to keep my fingernails as prettily maintained as these.
Photo © Anonymous | Flickr

Before I started, I said to my sister, “I think I’m going to start a blog about book characters who have celiac.”

“That won’t be a very long blog,” she said.

True. Luckily, I found I had more to say than, “What if Moaning Myrtle, or Mr. Darcy, or an American Girl had celiac disease?”

I’ve written seriously about books, food, hungermy own life, love, and doctors. I’ve gotten silly about messiness, sandwiches, brainfog, and the stars.

I fooled a few people on April 1st, got romantic on Valentine’s Day, and drew pictures on Celiac Awareness Day. I shared a cooking mishap or two, plus a success here or there.

Along the way, I gave up coffee, picked it up again, found a new apartment, and went to a bunch of fun events. Oh, and my tTG levels are down by at least 100. No big.

I’ve learned a lot about myself, health, science, writing, community, social media, and obviously gluten. It’s been great.

But what’s even better is the support I’ve received from all of you.

These probably aren't gluten-free. But I bet some of you have recipes that could make 'em that way. Photo © yeasaris | Flickr

These probably aren’t gluten-free. But I bet some of you could give me a recipe to make ’em that way.
Photo © yeasaris | Flickr

You’ve advised me on eating out, revealed your doctor horror stories, cheered me on when my results came back, shared your grocery shopping adventures, helped me write a letter to my doctor, and indulged me when I wondered whether packing peanuts have gluten.

Many of you maintain blogs of your own (which I follow), and that you take the time to comment on mine is nothing less than thrilling.

At this 100th post, I want to recognize you for all you’ve done to get me to where I am—as a writer, as a “celiac,” as a person. Thank you.

In return, I want to be sure I’m giving you the best I’ve got. I’m taking my cues from primetime TV and the POTUS: 100 episodes is the point at which a show is traditionally considered for syndication, and 100 days into each term is a time to assess the Prezzie’s achievement thus far.

So what I want to ask you is: how am I doing? 

– What do you like the most? What can I do better? If you’re new, what would convince you to stay?

– Do you hate that my links to outside sites always open in a different window?

– How do you follow my blog? Facebook, Twitter, email, RSS, or another platform? How many times a week do you check in?

– Do you have any trouble navigating? Do you read on your phone, and does it look OK?

– Do you want to work together on a post, series of posts, or another project entirely? I’d love to.

Please give me some feedback in the polls below, and/or leave a comment. You can also always get in touch by email; unless you’re a bot, I would love to hear from you.

Thank you again for your inspiration, advice, humor, knowledge, and support. I hope I’ll see you back for post #101.

Do you wear your snake-eating-a-unicorn tattoo on your sleeve? (Or, do you call yourself a “celiac”?)

Does illness define you? I’ve joked about this before, but it’s worth serious consideration. How much of a part of you is your health? And how much should it be?

Plenty of people identify with their illness enough to name themselves after it: diabetics, celiacs, Crohnies, Lymiesspoonies. The use of these names is vehemently opposed by others who consider them dehumanizing. “You wouldn’t call yourself ‘a cancer,’ would you?,” they prod. 

It’s a fair point, although many do call themselves “cancer survivors”—another way of identifying themselves by their disease. (Also, according to Wikipedia, some folks with terminal cancer reject this name in favor of cancer “diers.” I was unable to independently verify the name is used by anybody outside of Wikipedia. Have you heard of this?)

Look at just about any medical condition and I’m willing to bet you’ll find a subculture and nomenclature to go with it. You’ll find people affected by the condition who don’t participate in the subculture (or who don’t even realize it exists), and you’ll find people who have thrown themselves body and spirit into it. You’ll find people who hate that the subculture exists, and people who can’t imagine existing without it.

And in between you’ll find lots and lots of people totally confused about how much to participate, what to call themselves, and how much to allow their condition to matter in their lives.

Diagnosis identifies the disease, but we have to decide, afterwards, how to identify ourselves.

Author Hilary T. Smith, in her book Welcome to the Jungle, suggests diagnosis is like waking up one morning to find “a big old snake-eating-a-unicorn tattoo” on your bicep.

Seeing the tattoo, she writes, you might react in several ways:

tattoo of badger fighting snake

I was unable to find an image of a snake-eating-a-unicorn tattoo, but I did turn up this snake-fighting-a-badger tattoo that I am thinking about getting sometime.
Photo © BreadnBadger | Flickr

Underidentification: “Ho ho ho! This is surely but an amusing temporary tattoo placed on me as a prank. It will certainly wash off in the shower.”

Medium-Low: “This tat is real, but I am going to wear long-sleeved shirts for the rest of my life to cover it up.”

Middle: “Living with this tattoo is going to be a b**** and a half, but it’s also kind of dope.”

Medium-High: “Short sleeves for me, baby.”

Overidentification: “This tattoo defines me, man. I’m going to tattoo the rest of my body with snakeskin and have a horn surgically implanted on my head.”

(Smith, Welcome to the Jungle. Conari Press, 2010)

The book is about bipolar disorder, which I myself don’t have (and no, I’m not just underidentifying). Still, especially as I got to the end of the list, I knew this applied to me.

Although I prefer not to call myself “a celiac,” I do give celiac disease, and being gluten-free, a lot of space in my life and identity. Sometimes, I wonder whether I’ve given it too much.

For example, when I renamed my Twitter handle @spruestory, I wondered if that was taking it too far. I mean, that’s my only Twitter handle, and it’s now named after my celiac disease blog. Was this really how I wanted to “brand” myself? Would I look back one day and wish I hadn’t?

Clearly, I decided it was worth it to change the handle (and that Twitter isn’t worth so much existential angst). After all, I’ll have this disease for life, so I doubt I’ll be looking back five, ten, fifty years from now and thinking, “Gee, I wish I hadn’t told everyone I had celiac disease.” Unless the whole world goes gluten-free or they discover a cure, five, ten, or fifty years from now I’ll still need to be upfront about my disease. I’ll still need to announce it on dates, to new friends in response to dinner invites, to strangers at restaurants before I order, to bosses and colleagues at work. It may not be the first thing I’ll talk about, but it will come up.

But will I one day wish I hadn’t talked so much about celiac disease? Will I wish I had identified with it less? Maybe. I wish it already, sometimes. But, as I said, this disease is for life, so I’ve got plenty of time to figure it out. Until I do, I think I’ll stay far away from tattoo parlors. No snakes, unicorns, badgers, or Xed-out sheaves of wheat for my bicep, thank you very much.

What about you? What do you refer to yourself as? Where do you fall on the snake-eating-a-unicorn identification spectrum? Has that changed over time? Are you happy with where you’re at now?

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Going (to) Against the Grain…Help!

Tonight, I’m going to a restaurant. For most people my age in New York, that’s a regular occurrence, but as most of you know, for me, it’s not.

The spot sounds great. It’s described on Yelp variously as a “magical hideaway clubhouse” and “the absolute best place to throw a small, intimate party without much hassle.”

However, despite its tease of a name—Against the Grain—its specialties run more toward grain-based dishes (like soft pretzels and “chorizo in a poncho”) than against them. And when I say grain, I don’t mean sorghum.

Yelpers also suggest, “If your tastes run to beer and you want to have it and only it chalkboarded on the walls, enter here,” and, “If you aren’t a beer drinker, well, hello!, don’t come here.

Clearly, this isn’t my kind of place.

But, as you’ve likely gathered, I didn’t choose it. The restaurant is where a friend is having her birthday party. Her tastes do run to beer, and the soft pretzels do sound awfully tempting, and it is her birthday, so I don’t at all fault her for choosing it. In fact, she graciously called the restaurant on my behalf to inquire about gluten-free options and let me know, basically, there weren’t any. (At least, nothing guaranteed safe.)

stack of non-gluten-free soft pretzels with salt

What I’ll eat tonight is unclear, but it won’t be this.
Photo © Tommi Arina | Flickr

The question then became, what do I do? Although I’ve read all the advice in the world, it seems, I’ve yet to experience this situation. Most of my friends throw parties at bars, where it’s far less awkward not to eat anything, or at home, where dinner is rarely on the menu. And my sister’s graduation weekend featured a catering staff that at least made an effort to accommodate me and a birthday/graduation party for which my parents made everything gluten-free.

I’ve spent the week meaning to call the restaurant in a quiet time and ask whether they mind if I bring something with me, but in typical procrastinating fashion I’ve put it off. There’s still time to do it, but even if they say it’s fine, I’m afraid I’d feel awkward when it came time to plop my tupperware down amidst the small plates. But would it be more awkward to be the only one not eating?

I can’t decide, and as I muse over (and blog about) it, my window for packing anything before I leave for the day is closing. I wish it didn’t require this much thought, but such is celiac life.

What would you do in my situation? Let me know in the poll below, and if you have more advice, or stories about your own dining-out travails, go ahead and put it in the comments.

Happy Friday, everyone! Hope your plans for this evening include good gluten-free food, or at least—like mine—good gluten-full friends.

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