5 year old daughter with "atypical FPIES"

I have a five year old daughter that has suffered from multiple food allergies and sensitivities since birth and they continue to worsen. She does have confirmed food allergies to: peanuts, tree nuts, and dairy. She was able to eat other foods fine until she was about 2.5 and suddenly starting having unbelievable diarrhea multiple times a day and after doing a food diary confirmed that she was now sensitive to pork, beans, sunbutter, rice milk and more. Once removing those foods from her diet, her symptoms stopped. She was doing fine until about a year ago, began having uncontrollable diarrhea again and confirmed she was now sensitive to beef. After going to a GI doctor and good allergist, the allergist said that she had what he thinks is "atypical FPIES" as she doesn't have all of the symptoms but will have non-stop diarrhea for days when foods that bother her have been consumed and as mentioned, continues to have more that she cannot have that never bothered her before. She will be 6 in December. I am just wondering if anyone else has experienced anything like this in their child? Thank you for your support!

Original Post

Hi,

My son has "atypical FPIES" as well- he turned 2 this summer.  Our story is not exactly like yours- but there are similarities.

We have started losing "safe" foods like you experienced starting right before the age of 2- He ate watermelon, peaches, pineapple, carrots, green beans, and skillet beef for over a year before they all failed.  So, when we have a food failure, we have to examine all his food.  Not just the food that is currently on trial . . .

We also have seen just diarrhea as a symptom for certain foods (though we get a plethora of symptoms with other foods, as well as the classic "vomit").  These foods went right to the severe diarrhea stage (yes, for days) without any other symptom- sandwich steak (100% beef), apple juice via breastmilk, and limeade via breastmilk. 

Also, like your daughter, our "fail" list is huge.  Our son currently has about a 10-food diet, but has luckily always been a healthy weight.  Our goal is to just simply keep him in food even if we have to continually remove and add.

I encourage others to post about aypical FPIES- it could really help.

-Jess 

Hi Mary,

An update with our "atypical FPIES"- my 2-year-old son just failed beef in all forms after eating it for over a year.  My son also just failed a pork trial (ham) at about the one month mark.  

So, my son now shares your same list of failing dairy, beans, pork, and beef in the protein category (he has lots of other food failures as well).  He dislikes SunButter, and elemental formula never worked out for us.

He has never tried the common FPIES triggers- chicken, turkey, and fish.  He has never tried eggs.  Our only protein source right now is quinoa and breastmilk.

If you have a chance, do you mind sharing your pass list in the protein category?  I realize that every FPIES case is different, but I'm always looking for ideas.

-Jess

Hi Jess,

thanks for the update on your son. As of now, my daughter can still have chicken, turkey, eggs (but she won't eat eggs) and fish (cod, pollock is all she's tried and likes). She recently reacted again to something so I haven't given her turkey in a while because I'm not sure if that's the culprit yet, but I'll let you know. She hasn't had quinoa in a long time, didn't really like it so I haven't tried it again. She is able to have all fruits and vegetables except corn in the kernel or cob form. She can eat corn chips. Thanks for continuing to chat with me, please keep me updated on your son and let me know if you have any other questions.

 

mary 

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