Food Protein Induced Enteropathy

I am a stay at home mom to two wonderful, adorable spunky little ones, Hannah (3) and Colin (3 months).    Our life is not terribly exciting  to the outside observer but my hope is that if I can help one other family out there with this blog then I am happy I shared our story.

Our son, Colin has been diagnosed with Food Protein Induced Enteropathy at three months old.  It has been challenging and a huge learning experience so far and we are just getting started.

It has been hard finding information on this, even our doctor got the medical book out to read it to us, but here is what we think we know so far:

Food Protein Induced Enteropathy is a food allergy that affects the intestines but is different from regular allergies.  It is a non-IgE-mediated disorder so unlike a peanut allergy for instance, skin prick testing most people are familiar with would show up as negative.  It is more like celiac disease.  It usually shows up in the first months of life with diarrhea, vomiting, and/or failure to thrive. Most commonly is is caused by reactions to milk and soy but egg, wheat, rice, chicken and fish can also be triggers. Colin seems to have some other foods that bother him as well, so not sure how that fits.  Children with this can grow out of it, usually by age two or three.  It is similar to but less severe than Food Protein Induced Entercolitis  (FPIES).  Children with Food Protein Enteropahty usually have less vomiting, no bloody diarrhea and less severe reactions to the problem foods.

Diagnosing:  There is no one magic test to diagnosis this.  Most commonly it is discovered when the symptoms appear, other causes are ruled out and the elimination of trigger foods alleviate the symptoms.

Treatment:  For us the treatment involves discovering the trigger foods and trying to eliminate them from my diet since I am breastfeeding.  Since Colin is growing so well our doctor believes breastmilk is doing him a lot of good and is a better choice than the specialized formula he would need if I stop breastfeeding.   In 6 months or so we might try to re-introduce foods or “challenge” them by feeding small amounts and then increasing the dose while watching for reactions.


2 responses

  1. Its so nice to find your blog-very helpful and refreshing! I am struggling with the same problem with my daughter, who is now 3 months. She initially got much better after I removed soy and dairy, but then her symptoms (which are similar to your sons) came back. I’ve been on the elimination diet but it was so hard and she still had blood in her stool (eating only rice, chicken, carrots, potatoes and gluten free oats). How many days after eating a trigger food would you notice a reaction? Knowing this would really help me figure out her triggers.

    • Sorry to hear you are fighting the same battle. Way to go on doing the elimination diet- it takes a lot of willpower and planning! I usually notice reactions 1-3 days after I eat something. Some things, like spicy foods, seem to bother Colin quickly. Other things take a bit. My guess is they have to be digested by me before they then get to him. If your elimination diet isn’t working you might consider a few variables 1. One of the foods you eat could be bothering your little one. We still can’t do oats. So you can try swapping out one food at a time for a week to see if it helps. I gave up and did a food diary since Colin got worse on my total elmination diet. 2. Changes will be slow. It is my understanding it can take a while for their intestines to heal. Do you have a doctor helping you at all?
      I hope you find the right combo for your little one! You are a great mama for doing this for her! It is a very frustrating/unclear path somtimes but hang in there, you can do it!

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