7 replies

Sunbutter FPIES Experience

JJ OhioMember

My DD has confirmed allergies (skin & blood) to cashews, pistachios and eggs.  She exhibited symptoms of hives and eczema any time she's ingested these ingredients.

I noticed that whenever we fed her sunbutter, a few hours later she would vomit profusely and become extremely lethargic. This occurred 3x that we gave her sunbutter.  I asked our allergist last time we were in to do a skin prick to sunbutter which came back negative, which further leads me to think it's an FPIES reaction vs. an IgE.

Has anyone else experienced this?  If so, did you also have a reaction to sunflower lecithin?  I don't believe she's ever ingested it before and I can definitely do a trial, but I'd love to hear others experiences with it.  We don't eat a ton of prepared foods, but I was hoping to give her hemp milk but have hesitated trialing it due to the sunflower lecithin.

I would love to hear anyone else's experience!

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    • Original Post
    MarkLaBossMember

    We just trailed sunflower oil to cook with as coconut oil has been smoking our house in the oven.  Our son Marcus did fine with it.  We are in the middme of a cauliflower trial and after that plan to move to sun butter.  If you no one responds or you want to wait a few weeks we can get back to you?

    Either way good luck!

    Mark

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    FrannyMember

    I reassure you that you are right .  I have realized that the additives are the contaminates for many of products our little one reacts to (polysorbate being a known and mixed tocopherols being very questionable).

    I don't know how old your is but after 5 years, I have also noticed her being effected by shock symptoms (two definite and very scary situations).  Apparently normal for those with food allergy/intolerance. 

    Call/text if you want 240-416-1663.  

     

    cooking notes:

    - Olive oil if you can most always

    - Coconut oil can be baked with (mixed in the product) but has a very low smoke point which means it is no good in the oven as a surface coating.

    - Sunbutter?  What is that anyway?  I looked at the container and most of the ingredients were. . .who knows where they come from.  Frankly, you are braver than me with that one plus the whole soy/soy lecithin situation (typically fermented through a wheat process which makes it out of the question for those with questionable wheat issues).

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    JessMember

    I second the advice on cooking with olive oil- my son reacts to almost everything and that has been safe.

    My son refused to eat Sunbutter (didn't like it).  So, we're trialing Tahini instead (made from sesame seeds.)  We'll see if it works!

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    **The FPIES Foundation does not provide medical advise, diagnosis, or treatment. ******THIS INFORMATION HAS NOT BEEN REVIEWED BY THE FPIES FOUNDATION'S MEDICAL ADVISORY BOARD.********* Terms of Use: http://www.thefpiesfoundation.org/index-9.html

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