A lot of people are concerned with my health situation, so here is a quick summary:
Last December, when visiting a doctor near Goroka, in Papua New Guinea, he observed that I had a butterfly rash on my face (that I have had for ten or so years…if not more), I was dealing with frequent urinary infections over the last couple of years, and I had a rash all over my legs and sometimes my back (seriously, I assumed it was fleas, even though no one else in the house was getting bitten). He thought it was a possibility that I had lupus. He did a test for inflammation which was high, and then later, we attempted to test for lupus, but because the blood had to be shipped to Australia under less than ideal circumstances, when the results came back negative, and I was still having unexplainable symptoms, he suggested I return to the U.S. for further testing.
Tests here also came back negative and the body rashes cleared rather quickly. The butterfly rash was diagnosed as photosensitive rosacea (it gets really bad with any length of time in the sun). I have utilized the best of the best at UCLA — rheumatologist, GI doctor, dermatologist, and infectious disease specialist. I am still waiting on test results from the infectious disease specialist, and have a colonoscopy with the GI doc, but other than that, I am close to done, as far as I can tell. Most look at symptoms, run a couple of tests, and then say “whatever it is, it isn’t in my field.”
My suspicion is hidden wheat. I have celiac disease. While the PNG diet really doesn’t contain much wheat, I haven’t done much to keep it out of the house, either. Maggie likes to bake, and the other three members of the family still eat bread. But I also followed a bit of intuition. As I was getting on the plane, I thought “wouldn’t it be a hoot if it was the tea?” I drink Numba 1 Tea all the time. But seeing how wheat is not a major crop in Papua New Guinea, using wheat as a filler in the tea like it occasionally is done here in the United States seemed highly unlikely.
But one day, I decided to check things out. I found the website, and then read about how they make tea. No mention of wheat — but it mentioned the machinery they used to make the tea bags. So I Googled the machinery. The machine uses a vinyllic glue when sealing the teabags. (vinyl? ew). So I Googled “vinyllic glue.” Bingo. It had wheat as a component.
The rashes, the mood swings, the brain fog, the digestive issues all seemed a bit more familiar now. It has been so long since I experienced anything like that. It was too low an amount to actually trigger GI issues, or did so only occasionally, but was enough to make me feel like crud. And the predinisone helped with that, too.
My functional medicine rheumatologist believes that the constant minor exposure aggravated my gut and threw my immune system into overdrive. Right now, there are a few foods I can’t have without a reaction, but I do feel a LOT better. So right now we are waiting for the last doctors visits, tests, and results, and then maybe can start planning to go back home to my husband and son.