Tag Archives: symptoms of celiac disease

The big 6

On Monday, July 29th, I intended to write about a momentous milestone in my life. But I wasn’t sure what to say that I haven’t said already before.

Finally, at the end of the day, feeling the need to mark the date, I went with, in the manner of all aspiring and procrastinating writers today, a Tweet: “As of today I’ve been gluten-free for 6 months. That calls for cake.”

If you’re into brevity, you might want to stop there. (But if that’s the case, I’m not sure why you put up with my blog in general.)

In response to my proclamation, probably picking up on the mention of cake, one Twitter buddy asked me if I ever cheat. We’ll come back to that one.

Another response came from Wendy of Palm Trees and Gluten Free, who wrote to congratulate me. She said, “It’s amazing how that date becomes as important as a birthday!”

I hadn’t thought of it that way, but it’s true. As on a birthday, I had that uneasy sense that I should feel different but don’t. Despite the importance we give to the occasion, a birthday usually doesn’t, in itself, represent a step forward. Sure, a few do grant you special privileges, like your 21st or 18th or 13th (if your parents truly didn’t allow PG-13 movies before then, that is). But by now, the majority of that kind of birthday is already behind me.

Instead, I’ve entered into that vast, undifferentiated stretch of road called adulthood, where birthdays are just markers of another year’s worth of life experience, thought of so rarely that I often can’t remember how old I am right away when asked. A birthday just means another year has passed. Not all at once, but second by second by second until 31,556,926 have fled.

Similarly, although six months’ worth of gluten freedom is a milestone of sorts, there was no reason to think that on the morning of July 29th I would wake up a changed person. Any change between the 28th and the 29th would have been so incremental as to be unremarkable. What’s important is the accumulation of improvements (however piddling) and experience over the course of those six months. Just like a birthday, this day meant no more than that I had made it a certain unknown percentage of the way through my gluten-free life.

As with a birthday, the amount of time the 29th marked seems simultaneously much shorter and much longer than it had really been. Shorter because, as has been observed again and again by writers more eloquent than I, it is in the nature of time to appear shorter when viewed backward than forward.

Longer because January 29th, the day of my official celiac diagnosis, wasn’t the first time I ditched wheat, barley, and rye. Almost three years before, I’d experimented with a diet low in pretty much everything thought to be tough on the gut (that’d be FODMAPs, and includes wheat, rye, and barley); I’d dabbled in “low-gluten” eating (which is basically a joke); and I’d done a whole-hog six-week gluten-free diet trial half a year before. Although it’s been six months of celiac-induced GFdom, gluten has been on my mind for longer.

Also because it’s been an intense six months. “I’m not sick because I’m stressed; I’m stressed because I’m sick”—how many times have I made that response? I still think it’s true, but it turns out not to be true that a diagnosis and prescription could take my stress away (hum that to the tune of the Berlin song). The certainty has eased some worries but added others: that the healing isn’t moving fast or far enough, that XY, or Z might have gluten in it, that I’m driving everyone crazy by talking about it all the time.

In honor of this date, I originally thought I might reveal all of my celiac symptoms on this blog (which you may or may not have noticed I’ve been quiet about, even as I bemoan our collective inability to talk about some of them). This wasn’t because you likely have any desire to know them but because I felt it would be terribly satisfying to cross off all those that had gone away.

But, after the sixth month, the truth is that few of what I believe to be celiac symptoms have actually resolved themselves. The gastro stuff is getting better, a little, but I still don’t know if the rest even are celiac symptoms. All I’ve gotten so far are “maybe”s and “we’ll see”s. To list what remains would be to jinx it.

So instead, dear readers, on this belated half-anniversary of my gluten-free rebirth, I leave you with only a promise: that six months, or twelve, or eighteen, or however many it takes from now, I will have crossed off more of that list. That I will not again succumb to the kind of complacency about my own well being that led to three years without a diagnosis. That I will beat this thing.

And—to answer my friend on Twitter—that no matter how long it takes, and how long it seems to take, under no circumstances and for no reason will I ever “cheat.”

Not even for cake.

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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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Help me write a letter to my doctor

Last week (erm, two posts ago…gosh, I’ve been lazy) I asked why doctors can’t just talk to each other. I wondered if all my docs could have put their heads together and figured me out faster. The consensus was “maybe, maybe not.”

Photo © Ben Weston | Flickr

Even though celiac disease is associated with a huge range of symptoms affecting virtually every system and function of the body, with implications going well beyond the gastrointestinal, it’s GI doctors who are overwhelmingly responsible for diagnosing it. Other doctors are less likely to be trained in recognizing it, and apparently also less likely to care. (Back in February, Jess of The Patient Celiac posted a selection of anonymous comments on an online doctors forum that included this gem: “Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”)

So although in an ideal world, any of my doctors could have diagnosed me separately or in collaboration (or a supercomputer could have), in the real world it was pretty much down to the one who specialized in intestines to diagnose me.

But she didn’t.

I saw a gastrointestinal doctor for the first time back in December/January of 2011 after half a year of symptoms (my insurance made it hard to see a doctor earlier, since I was in college out of state). In that half a year, I’d had an emergency room visit, I’d tried a strict low-FODMAP diet with no results (besides an initial placebo high that wore off after a week), and I’d worried a LOT.

The GI doc did a colonoscopy but—inexplicably—not an endoscopy or at the very least a blood test for celiac disease. She wasn’t interested in talking about food (turfing it to the dietitian guys, I suppose, though she didn’t set me up with one), and she sent me on my way with OTC meds and all but a pat on the head.

Since I first got my positive bloodwork results, even before I had a fully confirmed diagnosis of celiac disease, I’ve been toying with the idea of calling or writing to this doctor. Now that it’s nearly May—celiac awareness month, as you may be (heh) aware—it seems like a good time to follow through.

What I want to accomplish here is:

1) Tell her my story
2) Understand why she didn’t test me for celiac disease (or, if she did without my being aware, why she never contacted me with the results)
3) Let her know, if she doesn’t, that my particular symptoms are commonly associated with celiac disease
4) Encourage her to test for celiac disease before diagnosing IBS in the future.

What I don’t want to do is:

1) Come off as whiny
2) Come off as condescending
3) Offend her sense of her own expertise
4) Be immediately dismissed
5) Threaten a lawsuit.

Unfortunately, I’m a whiny, condescending, offensive, easily dismissed person prone to making accidental threats. So I need your help!

Have you ever written this kind of letter? Whether or not you have, do you have any tips for me? Any specific things I should say or not say?

Is it better to do this in writing or over the phone (in your opinion or experience)?

Do you feel this kind of patient-to-doctor education is possible and worthwhile? What are other ways to go about it?

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