The FPIES MCAS Theory

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.

Treatment for FPIES

My autoimmune disease causes vomiting/diarrhea when I eat food or take medicine I’m allergic to. It can also cause lethargy, dehydration and shock. 25% of FPIES patients also have regular allergies. FPIES is considered rare in babies, although some babies are misdiagnosed with reflux or milk allergy. It is really rare for an adult to not have outgrown the disease, like myself. The hospital treatment for a FPIES reaction is IV fluids and Zofran (an anti-nausea medication).

Mother’s day weekend of 2017 I was hospitalized for FPIES and ended up in the ICU. At the time only my son had been diagnosed and I wasn’t sure why I was so sick. I suspect I also have MCAS, another autoimmune disease as well. My body was so reactive at the time it felt like my throat was swelling shut for up to an hour after even a sip of water. It scared me a lot. I tried to find purified bottled water and getting a high tech water filter did help some. I was on a very restricted diet to breastfeed my son who very reactive at the time. I think I may have overdone eating peanuts, which caused the whole mess. I had recently lost 15 lbs in 2 weeks even though I was eating 3500 calories a day.

While in the hospital, on Mother’s day, alone, the doctors did not understand how I got so sick so quickly. The ICU doctor straight up did not believe that it was quick. My potassium was lower than some nurses had ever seen and yet I was still conscious. They told me I was dying and my breastmilk was toxic. I was in keto acidosis. The doctor insisted I had been sick for months and that sick babies need to be on formula. She called CAS on me and reported me for breastfeeding. She claimed I ruined my health to breastfeed. Maybe that is true, in a sense. Before going on a diet for Gavin though, I was sick a lot. I had no idea why. I took way too many pregnancy tests because of my random weeks of vomiting. Even birth control pills made me nauseous.

I ended up being released from the hospital on the Monday with better potassium levels. A week later I was breastfeeding again and Gavin was deemed failure to thrive, too allergic to have any of the formulas in Canada. Coconut water and eventually potatoes became staples. Now, I’m not breastfeeding anymore but I do have low B12. Burgers and B12 needles are on the regular menu these days. I know how to rehydrate myself and as long as I am careful to not ignore symptoms, things should be good. FPIES is usually straightforward but you can be more reactive when your immune system is down, think post flu or post antibiotics. It is really about management. Gut bacteria plays a huge role. Breastfeeding, playing in grass/dirt, petting animals are all helpful. Probiotics weren’t an option for Gavin because he was too allergic to the barley they were grown on, but even that, the evidence is debatable for their use long term.

My advice? When you have a sick baby, or a rare disease, it is really helpful to do your own research. We work really closely with allergists and at one point had a nutritionist for Gavin. I have the most faith in specialists.

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.