I’ve been dealing with a seemingly impossible condition for the better part of a decade now seemingly related to allergies and aberrant immune function.
The problem is extremely consistent and simple to describe. Every food I eat for more than a few days trends toward causing an anaphylactic reaction. I’ve heard every response imaginable from doctors, especially all the unhelpful and harmful gas-lighting type responses. “You can’t be allergic to everything!” I’ve changed hospital centers multiple times until now I see basically some of the absolutely most credentialed providers in the world. Their best guess is a condition called MCAS. This is a poorly described syndrome basically summarized as aberrant allergic type responses without a known cause. It is a diagnosis of exclusion. What’s absolutely insane about it is that it is “not criteria for disability” according to United States current standards. It has got to be the most insane thing that someone with a rare, life-threatening condition is struggling to stay alive and at the same time struggling to survive financially.
My primary care provider didn’t believe me for over a year until I brought beans to his appointment, a food I definitely do not have IgE allergy to (but have been eating for a week prior to that appointment), ate one bite, then he just watched me turn pale, have my HR go from 75 to 125, and have immense discomfort that lasted for a few hours. My stomach also ballooned out like I was pregnant. Even after that, he is like “I think you have something like splenic sequestration.” Yeah, I've never had changes in hemoglobin levels on labs at the emergency room. It really is like dystopian. It took 6 years before providers checked things like tryptase and PGD2, known immune mediators, to notice they are variable and for some sometimes out of the normal range.
I guess I bring this up because I really am at a loss for how to deal with this condition. I take all of the standard MCAS medications, which seem to reduce the severity of my reactions, however they do not prevent me from having to constantly switch what I eat or drink. I constantly struggle with malnutrition and disordered eating because I cannot eat anything regularly and stably.
Many patients with MCAS take Xolair after they try other medications that do not work well enough to see if it will help. We really need more efforts to deal with these types of problems and more medication research. More biological research as well because clearly immune knowledge is severely lacking. Supposedly many patients that develop Long Covid also develop problems with their mast cells too, so problems like this have to be increasing in incidence. Asthma, an immune system problem that used to be rare, has an almost 10% incidence now in the United States.