Diagnosis

It was about a month after my first miscarriage, after hope was extended and then destroyed. My heart still ached, and tears came quick and too often, and I felt hollowed out and old. I went to a women’s church retreat, perhaps hoping that a weekend away would give me some perspective, or maybe even some answers.

I remember that the theme was something like “A Time to Be,” and in the back of my mind I guess I wanted God to come to me and explain why it was not time for me to have a child. But that didn’t happen. Instead, that weekend started a whole different time in my life.

The second morning, I woke in my dorm-like room in the lodge with the worst cramps I had ever had. I spent some quality time in a bathroom stall, which kind of helped, but I still felt pretty bad. I went to breakfast, where I had just a piece of toast (the irony of which you probably can guess). I participated in the rest of the retreat, when I could.

Back at my in-laws’ house (where we were staying for the time between our townhouse selling and our new house being completed), I surmised that I had caught some sort of intestinal virus. I felt terrible for a few days, and somewhat better for a few days, and then waited to get wholly better.

I didn’t get better.

The painful intestinal cramps and diarrhea came and went. About the time I thought that I should really get to the doctor, it seemed to improve. And so I put off the doctor’s visit. It didn’t help that I had no primary care physician at the time, and it just seemed a bit embarrassing to spring these symptoms on a stranger.

And then, of course, it would get worse again.

I started to wake in the middle of the night and rush to the bathroom. Mornings, it was difficult to get anywhere on time. But by afternoon, I felt like myself again.

That summer, we went on a trip to Poland for a friend’s wedding. And I love(d) the heavier, crusty bread that is the norm in Europe. I ate a lot of bread, especially in the mornings when I wasn’t feeling too well, and the European breakfast of meat and cheese looked unappetizing. But the bread? That I ate.

What with the sightseeing and all, and never knowing where a bathroom would be, I also took Imodium frequently. It kind of worked. For a day or so at a time. But I still remember being in the middle of a small Polish city, practically doubled over with pain, and trying not to let my traveling companions know. Jon knew, though, and he was quite upset with me. Not for the sickness itself, but because I hadn’t seen a doctor sooner. And, of course, he was right.

I finally made an appointment to see a doctor in early September. He listened carefully, did a cursory exam, and gave me an initial diagnosis of Irritable Bowel Syndrome. I got some blood tests and some IBS medicine.

Not only didn’t the medicine work, it had a side effect of dry mouth. Which, when the doctor mentioned the possibility, didn’t sound so bad. Believe me, dry mouth can be bad. It felt like not only my mouth but my throat would just stick together and I would never talk or breathe again if I didn’t drink about a gallon of water right now.

So, back to the doctor. He said, “I want to give you one more blood test. You probably won’t have this, because it is pretty rare, but some of my IBS patients have been diagnosed with celiac disease.”

About the time he said rare, I figured I had it. My medical history has a peculiar pattern to it. Born with rare heart defect, diagnosed with a rare reproductive system defect (when my ob/gyn told me over the phone what the problem was, he asked if I was sitting down first), I didn’t seem to get common medical disorders.

A week later, the doc called. My blood was sort of positive for celiac disease. One of the blood tests was positive, that is, and the other two were negative. There was another test to make sure, said the doc (an endoscopy), but that seems kind of invasive. Why don’t you just stop eating gluten for awhile and see if it helps? (Later I learned that I should have had the endoscopy. And that celiac is not nearly as rare as doctors thought it was.)

Hm. Never had the words “Easier said than done,” seemed more true. When I started downstairs to eat lunch, I stared into the fridge for a looong time. My usual lunch was a sandwich. OK, couldn’t have that. But what about…no. Oh, here’s this…no. I finally settled on leftover pork fried rice. I didn’t know then that most soy sauce has wheat. That was the last pork fried rice I ever had that wasn’t made by my own hands.

Going gluten-free was an education. Sometimes it still is. I read books and books and books, and subscribed to an e-mail list, and read pages and pages online. I figured out what to look for in ingredient lists. I wandered the aisles of the local Giant, reading labels and getting more and more frustrated and nearly crying in the frozen food section. I darkened the door of a health-food store for the first time in my life, and nearly cried again to see a whole section with those beautiful words gluten-free.


About the time my celiac symptoms cleared up, another new time in my life began. Three months after that rare diagnosis, I finally received a common one: I was pregnant. And this time, hope grew and was delivered. Katrina was born. And the next morning, I met with the hospital dietician to discuss my need for gluten-free food during my stay.



Reading: Magic Hour by Kristin Hannah; and
Rumors of Another World: What on Earth Are We Missing? by Philip Yancey