What Might be Eating Me

When we were asked to come to Papua New Guinea, one of my first concerns was “what is the diet?”  I have celiac disease, and I didn’t want to come into the country and have to refuse everything my hosts presented in good hospitality.  I already dealt with that often enough in the U.S.  To not be able to eat the food offered, feels separating, not joining – which is what feasting together is supposed to be.

I was very relieved to find out that the traditional feast was pork and sweet potatoes (kau kau), and daily food was often vegetables and kumu (greens).   That would be easy.

It wasn’t exactly as easy as I thought.  Junk food has infiltrated.  People here like scones (really, rolls), and often cook their vegetables in Maggi cubes (a boullion mix that has dairy, as well as a ton of preservatives).  They will put ramen noodles in with the kumu, too.

Still, it hasn’t been terrible.  I’ve been able to avoid many of these things without a problem.  However, after a couple of months here, my legs started to itch.  They had bumps which looked somewhat like flea bites.  I figured that’s what they were.  But they seemed to appear overnight, and Jeff didn’t have any bites. This went on week after week and got worse.  My rosacea got worse as well.

After we went to Lae last December, we were sidelined at the New Tribes mission at Lapilo for a couple of weeks.  I started showing symptoms of a urinary tract infection.  As quickly as those go up to my kidneys, I made sure to get into the clinic.  The doctor looked at my butterfly rash on my face, asked me some more questions and then asked if I’d ever been tested for lupus.  The test had to go to Australia, and he figured that I might find a place closer to have the blood taken.  He did do a SED rate, which showed that I had a high rate of inflammation going on.  He put me on Cipro for the symptoms but the itching got worse, so I went back to Keflex (which isn’t the best choice, but Cipro is super-strong and can mess up a lot of other things besides bacteria).

We ended up going back to Lapilo for the test.  They were the only one who could send the blood samples to Australia.  The doctor put me on 50 mg. of Prednisone for a week, to arrest the symptoms, but when I tried to go down, according to his instructions, my symptoms got worse, and my joints ached terribly.  It would have to be slower.  The tests came back negative, but the doctor wasn’t convinced.  The samples could not be kept refrigerated all the way to Australia, so he was worried it was a false negative and sent me home.

On the plane, the itching stopped.  The fatigue and the joint pain took a while.  And they returned every time I went down a few milligrams on the Prednisone.  The tests were negative again.  My Functional Medicine rheumatologist also put me on a regimen to treat for leaky gut, tested for wheat cross-reactivity, and kept an eye on me.  I was staying with my inlaws, which was great. It was peaceful, but it was difficult to cook in another person’s kitchen day in and day out.  So Maggie and I started eating out a lot.  We lived at In-n-Out (lettuce wraps) and Chipotle.  And I started feeling A LOT better.  I really didn’t attribute it to the diet, because when I did cook, the food was incredibly healthy – grass fed and pastured meat, organic fruits and vegetables.

My SED rates dropped down when I stayed at Concordia Irvine for a month, leaving us to think that it was probably simply being exposed to wheat.  I felt good.  Really good.  And there had to have been some gut healing, because the one time I got glutened, I didn’t even react.

A week back in PNG, and I was itching again.  My joints ached.  I wasn’t having the tea that we thought had wheat glue in the tea bags.  No idea what could be causing it.  It was after I had bacon, so I had bacon again…nothing.  It was after I had eggs, so we tried eggs again, nothing.  But the next time, yeah.  But the time after that, nope.  It was like that with everything.  Mostly, we were eating stews – lamb meat, onions, garlic, carrots, sweet potato, potato, and squash.  Nothing really allergenic in any of those things, and again, it didn’t seem to happen every time.

We went to Australia, where again, we were eating out, or cooking smaller amounts of food at a time.  All the symptoms disappeared.  Except – when I cut up a squash, my hands burned.  The squash.  I checked out squash allergy, and while it is rare, the symptoms were pretty right on.   For the rest of the time in Brisbane, I felt pretty good, except the time I had risotto with eggplant.    But even when I got glutened, I felt pretty good.

Now we are back in PNG, and while things are a lot better, the bumps, itching, joint pain, are back.  I was reading about FODMAPS (a type of food sensitivity that includes a lot of foods, including gluten), and the article mentioned “low histamine tolerance.”  I clicked on the link.

Histamine is contained in many foods – especially tropical fruits (!), berries (!), tomatoes (!), and while meats do not have them when they are killed, they start building immediately, even in the refrigerator or when canned.  Bone broth is high in histamines (!)  Tomatoes (!), anything fermented like soy sauce (!), wine/beer(!), vinegar, sauerkraut (!), kombucha (!) and tea (!!!) sauces such as tomato based sauces and curries(!), pork – including bacon (!), egg whites (!), teas (!), and sodas (!).  Most vegetables don’t have histamine, but spinach, eggplant (!), and pumpkin/winter squash(!) do.

Just having one thing with histamine in them may not cause a problem, but several things together might, depending on the tolerance level.  Histamine levels might already be high during seasonal allergies, and so a reaction might be easier when that is already going on.

The symptoms are itchy skin and rashes, hives, diarrhea/cramping, headaches, joint pain, rosacea-flushing- acne, anxiety/panic, and foggy thinking.  Unlike allergies, they don’t necessarily start up immediately after exposure, but the histamines build up in your system, and a reaction might happen hours later.  This is a decent summary of everything I’ve read, with a link to an even better one:  “Headaches, Hives, and Heartburn:  Could Histamine be the Cause?”  

When I was in the U.S. and eating out all the time, I was having none of these things, except tea.  When I was in Australia, I was having very little of these things, except tea.  But in Papua New Guinea, we had a lot of tropical fruits, and because of our power situation, we would make big pots of stew that would stay out on the stove (why put it in the fridge when the fridge didn’t have enough power to cool it down?).  We would reheat it thoroughly, but it would be building up histamines all the same, probably a LOT of histamines.

It does seem to be the case. I’ve now made myself react a couple of times.  And two day old stew does make me react much more strongly than the first night.

It’s another one of those syndromes that many doctors don’t have enough proof that it exists, though documentation is building, especially under the term Mast Cell Activation Syndrome (MCAS)

This makes it difficult.  I don’t even know HOW to start eating differently here.  All of those exclamation points are foods that we eat.  There really is very little that we don’t.  Not sure what to do.

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