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 

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Mary135
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