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Not a cure

On New Year’s Eve 2013, I drove to Whole Foods with my color coded list of organic, low histamine foods. I spent two hours finding unfamiliar products and reading labels. I spent $300 on six bags of food.

On New Year’s Day 2014, I cooked low histamine food with my newly purchased groceries. It was the beginning of an experiment. I was going to go low histamine for 30 days in the hopes that it would calm down my mast cell reactions, autoimmune diseases and persistently debilitating pain. I had carefully planned menus and food prep schedules for all of January.

By the end of the first week, I didn’t know if I hoped this diet would help or not. Eating low histamine when work out of the home is a royal pain in the ass. You can’t eat leftovers, so you have to cook every day. I found that since I wasn’t eating bread type products, the meals were less filling, so I had to eat more often. I spent a lot of time chopping vegetables and washing dishes. And it was expensive. Very expensive.

At the end of the thirty days, I was having fewer mast cell reactions. But my GI tract was really irritated from the additional mechanical stress of eating such high residue food. While my joint and muscle pain seemed better, my GI pain was worse. I had more energy and slept better, but the GI pain and poor motility was worse. A few weeks later, I got a PICC line in a last ditch attempt to keep my GI tract moving.

I continued to eat mostly low histamine. I drink a can of soda every day. I added back in some foods that are not low histamine but which I reliably tolerate, like potatoes and limes. I cheated sometimes. But most of the time, I stuck to the low histamine diet.

The concept of curing your disease with food is not new. Fad diets have been based around this concept for many years. I think I notice it more now because “curing yourself with nutrition” talk is abundant in the places I have to peruse to find low histamine recipes. I disagree with a lot of it. And to be honest, I think a good chunk of it is really damaging and hurtful.

I believe that it is possible to feel better by changing your diet. I think dietary and lifestyle changes are really important tools in managing chronic disease. But that is not the same as curing yourself. If you have mast cell disease and you eliminate your food triggers and see a huge reduction in symptoms, you still have mast cell disease. If you eliminate your food triggers and no longer have symptoms, you still have mast cell disease. If you stop adhering to the diet, your symptoms will return. You cannot cure mast cell disease with diet (or anything else, for that matter.) You cannot. There is no cure for mast cell disease. Or for many other chronic diseases.

An article popped up in my Newsfeed a few days ago about someone who “just decided I wouldn’t be sick anymore, so I healed myself.” Stuff like this is so hard for me to read. It implies that those of us who can’t just heal themselves are deficient in mental fortitude or discipline. It implies that these people who “cured themselves” are better than us in some way, that the rest of us aren’t trying hard enough to get better.

I decided a long time I didn’t want to be sick anymore. I have tried so many things to manage my symptoms. I have tried things I am embarrassed to admit I have tried. If it were possible to cure myself of mast cell disease (and autoimmune disease and Ehlers Danlos and so on), I would have done it by now. Instead of having a magnificent recovery through healthy eating, I need to surgically remove the pieces that are damaged beyond repair and cut my losses.

I have more severe food reactions now than I used to, possibly because I am no longer desensitized to them. After an initial period of fewer reactions, they returned with a vengeance, stronger and more frequent. It’s hard to whether the source of my reactions is more internal or external. But I know with certainty that the low histamine diet did not cure me. And I know it never will.