FPIES Is My Life & It Sucks

My children and I have a rare autoimmune disease called Food Protien Induced Enterocolitis Syndrome (FPIES). When I first heard of it I thought it meant being allergic to all protien, the truth is weirder. It means being allergic to some protiens in a certain way. It causes projectile vomiting 1-4 hours after eating and/or diarrhea. You can also become lethargic and go into shock.

This is mostly a disease for babies and the hope is that they will outgrow it. My 4.5 year old has it mostly to red and blue food die. My 2 year old has a more serious case. It was very serious as a baby. He looked septic at one month and was labelled failure to thrive at 6 months. I’ve had it since birth and never outgrew it. I have a theory that because I didn’t know what was wrong, I never gave my system enough of a break. I went to doctors for years but all my tests came back normal. Unfortunately, for now, there are no tests for FPIES besides eating and seeing if you vomit.

I’m going to talk more about our experience in future posts and let you guys know how we are doing. All I can say is that today is my son’s second birthday. He is strong and otherwise healthy. He is even 11 kg.

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