Tag Archives: bloodwork

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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SISTER (CELI)ACT: two sisters, one diagnosis, zero gluten

This is the first of three guest posts by my sister Althea. (At least, she thinks it will only be three posts…) Enjoy!

Faithful followers of Based on a Sprue Story may remember me as the benevolent sister who agreed to forgo all glutenous foodstuffs (as well as anything that may have ever come into contact with a glutenous foodstuff) in her own home, out of respect for Molly’s dietary needs (and neuroses). What a thoughtful, altruistic sister, you likely thought. That’s what I thought, too, when we first made plans to get an apartment together.

There must be an Udi’s version of this by now, right?
Photo © Tamara Evans | Flickr

Just days before boarding the trusty old Lucky Star (may she rest in peace), however, I learned that I also have celiac. But there’s a twist. (No, not one of those donut twists, or the twist in your stomach, dear reader, at the mere thought of one of those donut twists—just a twist in the story.)

The twist is, I did not suffer for years from mysterious symptoms before getting this diagnosis. Sure, I had had some mild GI trouble from time to time over the past year or so, but everyone gets constipated once in a while, right? I was probably just eating too fast. Or drinking too much coffee. Not enough coffee? (Do yourself a favor and click on that last link—but only after you’ve finished reading this post.)

Me chopping parsley (a naturally gluten-free food) in preparation for our housewarming party (details to come).

In fact, I bet I would have ignored the issue entirely if I didn’t have such a good little awareness-raiser for a sister. Said sister urged me to get tested for the sprue (which, as my case illustrates, all  immediate relatives of a celiac should do, regardless of symptoms). I asked my school’s health center to do it, but the nurse practitioner there said it wasn’t worth it; “It’s not like you’re running to the bathroom every time you eat a sandwich,” she said. (Well, no, but that’s not really how it works, so… but, okay.)

In the end, I got the blood test when I was home briefly after graduation, and my antibody levels were off the charts. I haven’t had a biopsy yet, but a recent paper concluded that blood test results are strong enough evidence of celiac that a biopsy isn’t necessary.

So, apparently, I have celiac disease just as much as Molly does, which means I need to eliminate gluten from my diet just as completely as she does. Or do I?

In my next post, I’ll delve into the questions that get asked of someone who only sort of has a disease that confounds people enough as it is. Stay tuned!

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Good news, bad attitude

Guess what.

My test results came back!

I had been anticipating them with the same bated-breath anxiety that has preceded every report card or grade posting in my life (like I said, total Ravenclaw). When the email appeared in my oft-refreshed inbox, here’s what I found:

My tTG antibodies, which in January were hovering at some nebulous above-100 level, are down to 4. Single digits, baby! With the “negative” range defined as 1 to 3, that makes me practically normal.

My vitamin levels, which we all know I was having some trouble getting up, are now normal to HIGH, thanks no doubt to the multivitamin I’ve been dutifully taking (increasing my risk of cancer with every milligram, if the New York Times is to be believed). The one exception is the still somewhat low vitamin D, which is hard to believe considering how much sun I get. I mean, look at this healthy glow:

Photo on 6-27-13 at 8.51 PM

My WBC is just barely low and my RDW is just barely high, which according to Google indicates anemia, or maybe AIDS, or, most likely, nothing.

Everything else? Normal, normal, normal. Normal!

This is good news. It means my body is backing off. It means I’m doing this gluten-free thing right. It probably means, as my sister reminded me, that the Arrowhead Mills popcorn was perfectly safe. Phew!

With the active siege nearing an end, I suppose it also means that my little sprue city has begun to recover. Somewhere deep inside me, villi are getting to their feet, stretching out, feasting on now-overabundant nutrients. At peace at last, my body will, I suppose, turn its attention to patching wounds and rebuilding infrastructure and, from there, to business as usual. The battle is won.

But, like any good pessimist, I’m not satisfied. Eating away at the sense of victory is the fact that I still feel about the same.

If you’ll permit me to return to the report card metaphor: It’s a bit like getting an A in a class without feeling that you actually learned anything. There’s a sense that the instructor missed something, that the serviceable papers you wrote and the multiple-choice bubbles you filled in merely concealed the depths of your ignorance. That if the grader were just a bit more perceptive you’d have failed.

Thus, the picking through the results for abnormalities; thus, the restless Googling of unfamiliar abbreviations; thus, the overwhelming urge to diagnose myself with latent adult-onset type 1 diabetes or Sjögren’s Syndrome or acute hypochondria. Like any objective, abstract metric, the test results are unconvincing in the face of my subjective but oh-so-concrete feeling of being unwell.

I’ll see my doctor in a couple weeks to discuss the results, and if the visit is anything like the last one, she’ll tell me not to worry, that this takes time, that a handful of months—however long they’ve seemed, however many blog posts you’ve crammed into them—are brief in the scope of celiac recovery.

In the meantime, I’m curious to know, for those of you with celiac experience: which went first, the symptoms or the antibodies? 

And, for everyone: how do you think I should celebrate?

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So…was the popcorn gluten-free?

For those of you who have been eagerly awaiting word on the Arrowhead Mills popcorn question, I have an update. I finally got around to calling their customer service line yesterday (there was no great rush since I had, after all, already eaten it all).

Photo © Joakim Wahlander | Flickr

Photo © Joakim Wahlander | Flickr

The woman I spoke to—following some appropriately corny hold music—confirmed my suspicion: the popcorn is not made on dedicated gluten-free lines or in a dedicated facility. However, she assured me that they follow “good manufacturing practices” of sterilizing lines between runs, etc. She said that any of their products that have already been found to contain less than 20 ppm gluten would have the gluten-free symbol on the bag, and that they’re working on testing their way through all of their products. They have not yet tested the popcorn.

I asked, “So, conceivably in six months’ time, the popcorn might have a gluten-free symbol?,” but she said she didn’t know and couldn’t speculate on the timeline. Fair enough, because I’m sure the last thing any company wants is some blogger hopping online and posting false promises that, say, all of their products will be gluten-free by 2020. Plus, unless I stumbled across a Time-Turner, it’s not as though knowing their product will be confirmed gluten-free in six months would do me any good.

I wondered why they would test some of their products but not others, and why it takes so long to test everything. Is testing for gluten that expensive and/or time-consuming? Does anyone have any insight into this?

A couple of you commented that most popcorn should be safe. Personally, I’ve noticed some issues after eating popcorn, but there’s a good chance my weary GI tract just isn’t happy about handling large bowls of air- and fiber-filled corn right now. That’s not going to stop me from eating it, but I am going to check around for another popcorn brand. Though the Arrowhead Mills stuff might be safe, I’d feel better knowing the popcorn was either tested for gluten or processed far, far away from gluten. I will still buy other Arrowhead Mills products that say “gluten-free” on the bag, because it sounds like they have their act together.

Since the Arrowhead answer was a resounding “I don’t know,” I don’t really know whether or not to doubt my old air-popping cauldron. It’s been starting to die anyway, so I may just take the road of “When in doubt, throw it out” and get a new one.

On to another kind of testing: this morning I got NINE vials of blood taken out of my arm, to find out if my gut is still gutting itself. (The phlebotomist assured me I still had plenty of blood left in me; I’m not so sure.) As I left the lab, I found myself thinking, “Celiac’s blood…that’s got to be an ingredient in some kind of potion.”

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