Hi I have two daughters and I’ve been dealing with food intolerance issues with both of them and we were just told our younger one may have fpies yesterday. I’m hoping to get some advice.

My older daughter she is five and is still dealing with a MSPI . I nursed her for 1.5 years and I went off dairy and soy after she started making bloody diapers at 4 months. She didn’t seem to tolerate milk until she 2+ so we slowly added milk and soy back into her diet. I thought she was doing alright but now I’m not sure how much milk and soy is safe to give her. She usually doesn’t have symptoms unless she has dairy multiple times in one day. She gets severe cramps and diarrhea sometimes and it seems to line up with when she has too much dairy. She has lost a lot of weight lately but is still in a healthy range. I’m wondering whether it would be better to avoid dairy completely.

My two year old daughter has been a lot more severe. We notice the same issues with Milk tolerance immediately when she was born so I removed it from my diet while nursing.  She has never had a solid diaper. She has a MSPI but also seems to react with other foods like corn and almonds. Her allergy testing recently came back negative. I also nursed her for a year and a half and since I weaned she has had 4 “stomach viruses” that have put her in the hospital with severe diarrhea, vomitig and dehydration. Two of the supposed stomach viruses seemed to line up with when a family member fed her milk and soy rice and I’m not sure what else. I am having a hard time figuring out what her food intolerances are because she has never actually had a normal solid poop for me to compare it to. I have received varrying advice on which foods to avoid. Is there a diet plan or elimination diet that your doctors recommended for figure out which foods were the culprits or helping to heal their intestinal tract? I think most fpies is diagnosed earlier but this became apparent only after I quit nursing.

Im hoping to get a meal plan figured out soon because I am pregnant and will be delivering soon. I having been hoping to give family members a plan to follow while I am in the hospital.

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Hi. I have a two boys about the ages of your girls both with FPIES. It sounds to me like your oldest is reacting to milk and soy but her reactions are not as acute so when she has a little bit she might have swelling and other less visible symptoms. Our doctors have said that it’s not an intolerance and if you figure out that they are reacting that no amount is ok. Look at chronic FPIES for her weight loss symptoms. It could just be the milk and soy but also something else.

Your Little has never had baseline. You need to find baseline before you can control her symptoms and move forward. You can food journal and write down everything she has and eliminate the most likely culprits though any food can cause a reaction. Alternatively you can choose an elimination diet (working with a dietitian to do this is highly recommended) and only give her 6-10 foods (the dietitian can help you pick one’s that are together nutritionally complete) and see if she reaches baseline - note that it can take weeks for the reaction to clear her system. Then once baseline is reached add foods back one at a time (limiting it to a week or two per new food) and monitoring. Of baseline isn’t found you’ll have to swap out foods of the elimination diet until you find what works. My youngest didn’t have baseline on just breast milk until he was 14 months old and reacts to a ton of stuff through my milk.

i am not a doctor but I have been dealing with FPIES for a long time. My oldest has 14 safes and my youngest has 11 plus “limited ingredient” breast milk. They are unusual in terms of the vast number of reactions - my oldest reacts to over 70 foods and everything he’s never tried could cause a reaction. We bring all their food with them everywhere. No candy is safe. No normal kid food is safe. They can’t eat at a restaurant. It’s hard but normal for us. You can keep them safe once you get accustomed to what is required and educate those around you!

Happy to chat more if you’d like!!

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