Food Protein Induced Enteropathy, MSPI & FPIES

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.

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9 responses

  1. Thanks for your posts. We have been dealing with similar symptoms in my 6 week old who is breasted. It is hard to find information on how/what to avoid when breast feeding and I know that things I eat are making her miserable! Am now dairy, soy, garlic, spicy- free. Hopefully it helps. It’s comforting to know others have gone through it too, and get ideas.

    • Thanks for the message! 6 Weeks was when we really started to notice something was wrong with Colin too. Sounds like you’ve given up some of the big usual culprits. Don’t forget to give things like dairy at least a month to get out of your/Little one’s system. I think dairy protein is two weeks for each of you. The diet changes are tough but it is doable! Good luck to you and I hope your little one feels better!

  2. We have been diagnosed at 10 months with multiple non-mediated IMg intolerences (which to mean = we don’t know). Have had reflux, colic, weird rashes, burnt bottom, and general unhappiness from week 6, and never had a good nights sleep. Was convinced it was FPIES for a while, but symptoms never severe enough to fit this conclusively – first heard of F.P.I enteropathy today – tmight finally have a name for my wee mans problems. thanks

    • Sorry to hear about your little one’s symptoms. Thats so rough and it sounds a lot like what we experienced. Sleep is hard too, hang in there. I know how important it can feel to have a name for what is going on. I’ve only talked online with two or three other people who’ve been diagnosed with F.P.I.Enteropathy. Getting a name feels like a place to start from, a possible path to navigate. Glad you found this page. I hope things get better for you little one. Time has been our friend, things are getting so much better as the months go by.

  3. So glad to have come across your website. My 4 month old son has been through the ringer and we just keep getting told that he will grow out of it. He has been diagnosed with reflux, colic, MSPI and eczema. He is always extremely gassy and uncomfortable and NEVER sleeps. Not during the day. Not at night. Never. He is always crying. It’s heartbreaking. I have cut everything I can think of out of my diet and have been on the chicken, rice, carrot diet for almost 3 weeks. He’s still having unexplained rashes, spitting up (but it has lessened), a gassy tummy and non stop fussiness. I’m so lost.

    When did your son’s symptoms start to ease up with your elimination diet? Did you ever see a specialist or did you just stick with your pediatrician?

    • Hugs to you. Oh gosh I know- it is sooo rough. The lack of sleep is exhausting for everyone involved. I’m so sorry to hear you are going through this. We were hearing the same things- “He will grow out of it so it is no big deal.” I often felt that since it wasn’t life threatening, our doctors didn’t really care. They can’t do much. Trying to find the right elimination diet was really tough. Rice ended up being a food we couldn’t do and is a common trigger in MSPI kids. We ended up with chicken, carrots, corn and wheat. As soon as I took dairy and soy out, we saw an improvement within two weeks. It took a lot of tinkering with my diet, journaling to get things a lot better. It is a long rough road. Solids were slow too. Everything seemed a failure at first but I think it takes time for their little GI tract to handle anything. Hang in there and keep journaling everything you eat, all your son’s reactions and look for patterns. Try to limit it to one change for a week/two. I think it was about four days for a food to go through me to him and a reaction to occur. Sometimes less. I highly recommend Biogaia probiotic drops. Although pricey I felt like they made a big difference. Still using them aftera any course of antibiotics. The more I read and learn about the gut- I think little guys like ours are born with an immature GI system. We found a pediatric chiropractor and she did some tummy “hold” and our guy would pass so much gas and be a ton happier for about 3 days. Not a perfect fix since it was really diet caused but it helped.

  4. I hope you still check this!!!
    My ENF 9 week old is have the exact same symptoms as your Colin did. Her pediatrician said she was allergic to my milk after eliminating milk from my diet and her still having bloody diapers. I have since gone on the TED, things are better but we still have mucus diapers and blood once every day or so. How solid you get a baseline? And how long before he reacted to foods after you ate them? And I saw were you were caffeine free. I added tea into my diet and reflux was worse and more gas and mucus diapers. Can caffeine do all of that?

    • Sorry, I didn’t check my page in a while. It took a long while to get all the mucous to be gone. I don’t remember how long for sure but definitely a few weeks. You may not get to a “normal” looking poo, but look for improvement. Sometimes we saw mucous but Colin was happy otherwise so we didn’t worry about it as much. Caffeine did seem to make reflux worse. I don’t know about more mucous. Keep at what you are doing and journal everything!! We found more triggers as time went on. Weird things I wouldn’t have expected since they weren’t common allergens. Hang in there! You are a good mama for doing so much for you little one. It can be hard figuring it all out through trial and error. We had great luck adding biogaia drops into our routine. Google Biogaia but they also used to carry it at Walgreens. Crazy expensive but made a difference for us.

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