Tuesday, July 19, 2011

Not Your Average Food Allergy

After visiting the doctor, we have discovered what is wrong with Jake's tummy. He has FPIES (Food Protein-Induced Enterocolitis Syndrome). My instincts told me it was more than colic, and a mother's intuition is always right. Always trust your gut!!! Always! Medicine is not a perfect science and it has been really touch and go as we have pried for answers. At least we know, now we can deal with it.

We will see a GI specialist and an allergy specialist to find out more, but until then here is what we know:

What is FPIES?

FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response, a Non-IgE Food Allergy, in which food is considered a foreign invader and the body “fights/attacks” it until it can violently expel it; although the exact mechanisms are still not well understood.

Symptoms include: profound vomiting (often to bile), diarrhea and/or constipation. These can lead to: lethargy, low body temp or fever, hypo-tension, and in severe cases, sepsis and shock. And still yet, many children also experience many discomforting symptoms while the body "fights" this reaction and these can include: extreme stomach pains, gas, runny stools with or without mucous or blood, persistent hiccups, acid reflux, rashes, sleep disturbance, and agitation.

FPIES is a clinical diagnosis (based on symptoms), there is currently no test for it.

Good Morning America featured a little boy just this week, who has this rare syndrome. He can only eat 10 foods. Just like Jake, his parents had to take him to the ER on several occasions when he ingested certain types of foods.


Jake's symptoms were pallor, lethargy to the point he scared me to death, limp, sleep disturbances, vomiting, throwing up blood, and constipation to name a few. So far the offending foods include rice cereal and peaches. Two hours later, our boy turns a white/grayish color, turns limp, eyes not focused on anything, then projectile vomits. It is scary and it breaks my heart, but this is his life and we will make the best of it.


  1. I'm so sorry. You knew something was wrong and you were right. Intuition is a great thing. Now you can deal and move on and learn how to cope, at least for the next few years. He should grow out of it.

  2. I'm glad you at least KNOW now what's going on with your little man and can start helping him. You are right! Mother's intuition is a great thing.

  3. oh my goodness!!! that sounds terrifying! and to think that I thought Ally's issues were distressing!

    i hope you don't have to go to the ER a ton! good luck to little Jake (as well as you and Andy!)I hope he can eat more than 10 foods....

  4. Wow, that's so scary!! I can't imagine how intense and worrisome that is. I'm glad that they've been able to get more definitive results back. You both are wonderful parents and he'll do great! And by the way, that photo of him looking over the table is ADORABLE!!

  5. Yikes, that is crazy. Poor little Jake, sounds like he's been a trooper. I hope he's feeling better these days. Way to go mom for getting to the bottom of things!

  6. Oh Stacey! It's scary what we as mothers go through sometimes, but I'm glad you listened to your gut and found out what was wrong. Here's to hoping the offending foods don't span an extensive list!

  7. Thank you so much for the support. To finally have an answer to his tummy troubles is nice. There will be rough roads ahead, and that hurts me to think about as we trial every food, but we are optimistic that he will one day eat steak and potatoes and I wont have to breastfeed him until college!

  8. That's so crazy. Glad you finally know what it is though. Good luck as you try new things; here's hoping it's a short list of problem foods! Love the picture!