Mast Cell Disease Awareness Day Thing #2: Food

Hash browns - from scratch.

There tend to be themes among the stimuli that can trigger a mast cell reaction, but by far the most prevalent and most pervasive is food.

...and, as with most things in mast cell disease, it's confusing. While it is possible (and not uncommon) for mast cell patients to have true food allergies, mast cell food reactions are not in this category (as of now; that definition could change). The difference is that true food allergies are caused by an excess of IgE, an antibody released by - guess who - mast cells. In mast cell food reactions IgE may not be present at all. The symptoms of the mast cell reaction are just as dangerous, however, and can lead to any on the list of MCD body-wide symptoms including anaphylaxis.

Some of us can get away with soft avoidance. Others have a couple of super bad foods but everything else is ok. Some of us have a number of restrictions that can push us all the way down to just a handful of ingredients. Still others can't tolerate food right now and have formula IVs. Sometimes our food tolerances shift - we can lose "safe" foods or gain a food we had to stop for a while. In addition we're likely to have other food sensitivities, which just confounds things.

One thing that isn't really discussed, however, is how exhausting it is to think about food all the time. It's not just a matter of meal planning and grocery shopping or grabbing something while you're out. Some of us, myself included, have to plan every bite *meticulously* - no breaks, no cheat days, no pizzas or drive thru - or we can end up in trouble. If we're away from home many of us can't just run somewhere for food; we pack meals and always have emergency food with us in case we're gone longer than we think. Every increased or new symptom turns our attention to what we ate when and what else could have enhanced the reaction. It can take days to weeks to sort out a new reaction, and all the while you're suffering or taking epipens or in the hospital.

Pictured are potatoes (which I lost for a long time, but have them back for now) that I grated into hash browns. No store bought for me.