Re: 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!

1/23/182:48 PM

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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

2/9/181:29 PM

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JJ OhioMember

That would be great thanks. I need to just do a small trial but I hate to see her having a reaction.

2/9/182:01 PM

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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).

3/5/186:26 AM

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MarkLaBossMember

Sunbutter (from sunbutter.com) has this for ingredients: roasted sunflower seed, sugar and salt which is why we were so eager to try it. And it doesn't taste bad.

3/5/188:17 AM

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FrannyMember

You guys are lucky, I haven't been able to find this basic product in my stores. . . Hello Amazon!

3/5/188:19 AM

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MarkLaBossMember

Oh! It wasn't in a store.

We Amazon almost everything from 100% coconut milk w/ no additives to organic prune packs to elecare junior. Please check out my previous post on Amazon Smile and the FPIES Foundation.

3/5/188:59 AM

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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!

3/7/1810:14 PM

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