I have a theory that MCAS is actually out of control FPIES, food protein induced enterocolitis syndrome. I also have a theory that FPIES is not as rare as people think. I think it is incredibly common in babies but is misdiagnosed as reflux and milk allergy. FPIES is known for causing projectile vomiting when you begin solids at six months old. It isn’t the normal gag reflux since the vomiting is usually between 1-4 hours after eating. My son would vomit at an hour almost to the minute every time if he didn’t nap. I believe that sleep slows down digestion and can mess with the times a little.
I’m not a scientist but from research I will say the microbiome is involved. FPIES and MCAS are autoimmune diseases. From what I’ve gathered an important factor is upping the good bacteria in the baby’s gut. Some things you can do to do this are spending more time in nature, time around animals and breastfeeding. I will say the FPIES can be an unpredictable rollercoaster. Not every person will react the same. I’ve had periods in my life where I felt cured and I had periods where I am very stressed and sick. I do think though that my children and I may have MCAS as well, mast cell activation syndrome. Sometimes I eat a trigger food and my body reacts strangely. Chills and lethargy instead of vomiting. My daughter has very sensitive skin and we all have regular allergies. I once heard that 25% of kids with FPIES have regular allergies. It is still such a newly discovered disease the research grows every year.
So now you know the facts and theory, I’m now going to tell you about my life. A patient’s and parent’s perspective. I aim to give you hope that things will get better but reality is, if your child has a severe case, you may be in the trenches. I know of kids who are three years old only on formula and three foods. I know of kids who develop kidney disease. Our little autoimmune kids need our help. I like to say our babies have sensitive systems. The will grow big and strong they just need our help. My life is a warning to what happens when you ignore FPIES. When you don’t know what is going on, when you don’t believe your kid’s tummy aches. I truly feel the faster you treat FPIES, which is just avoidance of food they are allergic to, the faster they recover and get over it. I am 28 years old and I still struggle with FPIES sometimes. I know there are other adults who have a random sensitive stomach. There is hope for you too.