Put on That Sweater or Die!

Does this look like the face of cryoglobulinemia? Modern science does not fully know why Amanda Moebeck cannot eat ice cream.
Nathan Grumdahl

Despite having lived through 27 years of Minnesota winters, Amanda Moebeck didn't see a doctor about her condition until last May when a scoop of Sebastian Joe's ice cream nearly killed her. "My throat swelled shut and I had to be rushed to the hospital," she says. "At first I thought I was allergic to something in the ice cream."

Her ailment is one that deserves the utmost sympathy but usually has people convinced that she's nuts. Moebeck is allergic to the cold.

"People think I'm making it up or that I'm faking it or that my doctor's a quack," says Moebeck. "It takes an awful lot of convincing to get people to believe that I am in fact allergic to a temperature."

I have no problem believing her, as I used to have it, too. For four miserable teenage winters, I was plagued with cold urticaria, or cold-induced hives. Upon coming inside from the cold, the swelling would start. My fingers felt like sausages barely confined by their casings and my flushed face looked like it had put on a few pounds. My skin felt hot, tight, and itchy. Half an hour later, I was back to normal: 13 and more self-conscious than ever.

But as Moebeck says in an e-mail, I'm one of the "lucky b*st*rds." It was only the hives and I outgrew it.

Over a few visits to the doctor, Moebeck was tested for allergies and the only thing she responded to was an ice cube held on her skin. In the past she'd gotten the hives while "getting out of the shower when it's cold. And stepping outside in the winter but also in the summer when it's been hot all day but then it cools off.

"I guess I just thought everybody got that," she says.

The doctor told her that the ice cream incident was normal for an adult onset of cold urticaria. "He grabbed my arm and he pointed from my wrist to my elbow," she says. "If that amount of my arm is exposed to the cold for seven minutes or so, it would release enough histamines for my throat to swell shut."

Now Moebeck takes antihistamines daily and carries an epinephrine pen at all times. Should her throat close, the self-injected dose of adrenaline would keep her breathing long enough to get to the hospital.

If these stories seem strange, it's because cold urticaria isn't very common. Dr. Hannelore Brucker, an allergist at Southdale Allergy and Asthma in Edina, says she sees no more than 10 cases of it a year.

Perhaps this explains why, having been warned of my peculiar curiosity, she answers the phone with textbooks in hand. She begins reading passages and patiently spelling out the words I don't recognize, which is most of them. It quickly becomes clear that no one's really sure what causes this absurd affliction. It's been linked to syphilis, but given the fair number of adolescent cases, that's obviously not the best conclusion to jump to. (Confidential to Mom: I did not then--and do not now--have syphilis.)

Brucker maintains that an underlying disease such as cryoglobulinemia, which involves abnormal proteins in the blood, causes the allergy. But she's never come across abnormal protein test results that helped diagnose a cold urticaria patient. "You feel obliged to do it. You check everything you can possibly check but I haven't seen it come back positive in 21 years," she says. "In cold urticaria we don't have a whole lot of clues."

Though the allergy may be uncommon, a mass e-mail I sent out in search of fellow sufferers received a few Oh, that's what I have? responses. To those who think they might have it, Brucker stresses the importance of staying away from cold water. "The most important thing for people who have this is that they don't go in lakes or pools by themselves. They could get hives all over and they could faint because the swelling would be so intense."

In most cases, cold urticaria is little more than a nuisance. But the next time a complaint about the winter weather rises to your chapped lips, remember Moebeck. "I've been very tentative," she says. "I haven't even had a frozen margarita because I'm scared of what might happen. I'm avoiding it at all costs."

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