Hi All, 

My Fpies journey began when my son was about 7 months after having successfully eaten solid foods for 3 weeks he had his first reaction to baby oatmeal which resulted with him in ER with constant vomiting, lethargy and hives.   We were under the assumption at the time that it was a stomach bug.  Two weeks later he had oatmeal again and had the same reaction; except this time he also had some severe swelling in his eye.  Then a week later, he had another reaction to squash.  After several visits to the allergist he came back positive to wheat, oat, squash and dairy even though he has not ever tried dairy except ingesting it through my breastmilk. 

Our GI and allergist both agree that he most likely has FPIES after doing a series of intestinal tests which all came back normal.  My son is 12 months old now and for the past 3 months we have been doing at home food trials to broaden his list of safe foods.  At 9 months we started to supplement his diet with Elecare Jr and now that I am done breastfeeding his diet consists of Elecare Jr and a combination of the few foods he can eat.  Our recent problem which landed us in the Occupational therapists office with a nutritionist was he seemed to be traumatized from his severe reactions and wanted nothing to do with solid foods except in popsicle form.  He is very slow at allowing us to feed him and form of solid food, so the food trials are a very slow process to say the least.  

I'm hoping someone out there could suggest a safe probiotic that is FPIES friendly (free from dairy, gluten and soy) .  Our nutritionist and a lot of research I have read points to healing the intestinal flora once the reactions have calmed down in order to potentially flush out this disorder sooner than not.  Has anyone had a luck in finding a safe probiotic or seen any differences in their child's health or symptoms after being on it for some time?



Original Post

My oldest was safe with baby life probiotic powder but it has maltodexterin which is a form of corn and it was not safe for my youngest. For him we use Bioamicus Probiotics which have sunflower oil and medium chain triglycerides.

Both my boys are in oral motor therapy for severe food aversion and lack of muscle tone. If you child hasn’t been evaluated by a speech language pathologist you should do that as well because you can’t treat oral aversions if you have not first addressed muscle skills. This can be done by a qualified therapist without food if needed. Our therapist trains other therapists around the world in the oral sensory approach.  Please let me know if I can help you get information that may help you child.

My oldest is five with 12 safes and my youngest is two with 7 safes but only eats 6 now plus breastmilk—I am on a severely limited diet because of the reactions through my milk.

My son was fpies to milk/soy from birth. He is now 5 and fpies free. He failed a milk food challenge at 3 and then I introduced culturelle kids probiotics to him. They are milk, soy and gluten free. I was afraid of probiotics because an fpies specialist told me that they can trigger a reaction and scared me away from introducing it to him. After he failed the challenge I decided to give it a try. He had no reactions and has been on it every day since. At 5 he passed both his milk and soy challenges. I do feel the probiotics contributed to his gut healing. I also have a 3 year old non fpies child. She has regular food allergies and eczema and also started her on probiotics at a year. Since then She had outgrown her milk allergy and eczema and now only has a tree nut allergy left. I don't think this is a coincidence.  In my personal experience I feel the probiotics helped both of them. I would just research all the ingredients in the probiotics and introduce it very very slowly. The only thing I did for my son was follow strict avoidance of his trigger foods, give probiotics, pray and allow time to take its course. Hang in there. I know how difficult this journey is. Good luck! 


My allergist also suggested culterelle as he said probiotics can help with kids with fpies. However, it gave her severe diahhrea which i thought may be attributed to the artificial sweetener in it (xylitol). Since she reacts to dairy and soy, i havent been able to find one without either of those components but would love to try one if I could since there is a lot of research out there showing it can be beneficial. I might try one of the ones listed above. Thanks for the suggestion!

Did you introduce it very slowly?Like only a pinch of the powder and work your way up? Also, there is one with added fiber it in. You were using the original and not the added fiber? You could always try again to be sure the diarrhea came from that. So many trials with fpies. 

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