Shortly after he was born our son Colin showed signs of trouble with his digestive system/food. He had reflux, green mucous for diapers, blood specks in his diapers, constant congestion, eczema, a diaper rash ring we couldn’t cure, misdiagnosed “colic” and general signs of discomfort. He was diagnosed with Food Protein Induced Enteropathy at three months old. He is MSPI- Milk Soy Protein Intolerant with other food sensitivities as well. Most recently we think he has Food Protein Induced Entercolitis (FPIES) to at least oats. It has been challenging and a huge learning experience.
FPIES: Colin has a severe vomiting reaction to oats two hours after eating them and becomes lethargic. These symptoms led the doctor to suspect FPIES. Since we are very new to FPIES, I’m not including a paragraph here just yet, but you can read my post about it here.
Milk Soy Protein Intolerance– an inability to digest the proteins found in milk and soy. There is no test for MSPI and it is different from a dairy allergy. MSPI is a delayed reaction to a food protein that can cause a variety of symptoms like diarrhea, fussiness, reflux, vomiting, blood in stool and mucous in stool, congestion and rashes. This page provides lots of information about it.
Food Protein Induced Enteropathy: 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 not provide useful information. It is more like celiac disease than a food allergy that might cause hives or swelling. It usually shows up in the first months of life with diarrhea, vomiting, and/or failure to thrive. Most commonly it is caused by reactions to milk and soy but egg, wheat, rice, chicken and fish can also be triggers. Children can grow out of this type of food allergy, usually by age two or three, although some food sensitivities may remain. It is similar to but less severe than Food Protein Induced Entercolitis (FPIES). Children with Food Protein Enteropathy usually have less vomiting, no bloody diarrhea and less severe reactions to the problem foods.
Colin was originally exclusively breastfed and so his food reactions were actually from things coming through my breastmilk. Now that he has started solids we’ve had trouble finding foods that don’t cause upper or lower gastrointestinal upset and major sleep disturbances.
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 originally involved discovering the trigger foods and trying to eliminate them from my diet since I was/am breastfeeding. I tried a total elimination diet but it didn’t go well for Colin or myself. I began eating very simply, cooking everything myself and keeping a detailed journal of my food intake and Colin’s sleep/reflux/diaper contents/fussiness. Slowly we found trigger foods and as we removed them, all of Colin’s symptoms disappeared. 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.
9/10/12 -not eating Dairy, Soy, Nuts, Oats, Chocolate, Avocado, Peas, Beans, Sweet Potatoes, Cabbage, Brussel Sprouts, Caffeine, and anything spicy.
GROWING OUT OF IT:
We heard he would grow out of it and although living though this day after day seems so long and so untrue, the truth is Colin has made slow but continuous progress. These days felt so far away when we were first trying solid foods but for those of you out there struggling too – there is hope!
Colin Age 1 – Could eat carrots, rice, wheat, chicken. Started Neocate Junior formula and nursed until 20 months old.
Colin Age 2.5- Could eat everything but dairy, soy protein, chocolate. Won’t try most veggies. Passed oats !! Could tolerate soybean oil from time to time.
Colin Age 3 – Can eat everything but soy protein, chocolate and most dairy. Tolerating minimal amounts of cooked dairy in baked goods!
Note: At age 3 there are many foods Colin won’t eat – any beans, sweet potatoes, most vegetables to be honest. We don’t see reactions if he tries them but he just won’t eat them. We blame much of this on him being a very picky 3 year old but I also don’t push these issues with a kid that has had so much trouble getting to where he is at today.
Colin Age 4 – Can eat everything but soy protein, chocolate and dairy. Minimal amounts of dairy in baked goods ok but he does not eat it daily.