Hi!  It's been a couple years since posting here. I have a 12 year old daughter who was diagnosed with FPIES as a 6 month old infant. She reacted to rice with classic symptoms of profuse vomiting landing us in the ER a few times. She has other GI issues and allergies as well diagnosed as she got older. She is allergic to dairy as well. I'm wondering if anyone here has any experience with symptoms of FPIES in older children. We were told she would outgrow the allergy but have avoided rice until about 3 months ago. She's had Japanese rice with no reaction at all. We tried it three times. All three trials successful. For the last couple weeks she has had a few episodes of severe abdominal cramping followed by nasty diarrhea lasting about 6 hours. We have back tracked her having eaten Spanish rice I cooked at home 2-3 days prior to each episode. I'm wondering if this is related to FPIES or possibly MSG??  I just looked and one of the spices which I just bought 3 weeks ago to make the rice had MSG in it. To my knowledge she's never had MSG before. I'm grasping at straws here. She's been doing so well and I don't know why we are suddenly having all these problems!  It's frustrating. Any thoughts or feedback are appreciated.
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Hi and sorry to hear your daughter is having these reactions. My daughter is 9 and still has very few safes. I'm not a doctor but MSG intolerance is one of the more common triggers among the food additives, but it sounds less like the typical type of reaction people have to MSG. It sounds more along the lines of an FPIES reaction to me. My daughter is fine with white rice but one teaspoon of sweet brown rice flour in a cupcake recipe ended in the ambulance taking her for a two day stay at the hospital. That time it was the typical acute reaction, but she has had slower building reactions to other foods that took several exposures to show a full blown reaction.

Originally Posted by sarahsmommy:

Hi and sorry to hear your daughter is having these reactions. My daughter is 9 and still has very few safes. I'm not a doctor but MSG intolerance is one of the more common triggers among the food additives, but it sounds less like the typical type of reaction people have to MSG. It sounds more along the lines of an FPIES reaction to me. My daughter is fine with white rice but one teaspoon of sweet brown rice flour in a cupcake recipe ended in the ambulance taking her for a two day stay at the hospital. That time it was the typical acute reaction, but she has had slower building reactions to other foods that took several exposures to show a full blown reaction.

Hello!  Thank you so much for your reply.  So sorry to hear about the scary reaction to the cupcake!  We have an appointment with my daughter's pediatric GI specialist in a couple weeks (the soonest they could get us in).  She's had two more episodes since I posted my original question.  She has had absolutely no rice recently so these last episodes weren't triggered by rice.  It's almost like her GI system is just so ticked off now that any little thing sets it off.  These last two episodes seem to be linked to having eaten fried food (french fries for one and fried chicken for the other).  Fried foods have never been an issue before though.  This is so frustrating.  We went to see her pediatrician which was not super helpful since he looked at me like I was from Mars when I said my daughter has a history of FPIES to rice.  Ugh.  Thanks for listening. 

Hi,

 

So sorry that you are going through this.  It is so difficult because we love our children so much and hate to see them suffer.

 

My 22 year old son still has Milk Protein Induced Enterocolitis Syndrome.  The first reaction he has was at 2 weeks old. 

 

Best Regards

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