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Topic Summary

Posted by: PurpleCat
« on: September 26, 2017, 04:38:39 PM »

Bulk bins and Whole Foods....two words and situations I will never trust!

Our Whole Foods provided a "safe" birthday cake for another allergy family in our town.  Holy cow....serious reaction and the bakery said well 'we didn't promise" we do have xxxx in our bakery.

And bulk bins, I've watched them being filled, no way at my Whole Foods they take any precautions and then add the shoppers mixing things up and it's a hot bed or risk.

Also, according to our allergist, pistachio and cashews are in the same botanical family but they are not the same protein makeup.  My DD can now eat cashews, her pistachio numbers are high and our allergist said no to trying to challenge that.

Sorry.  Now I wish I had sent you safe cashews for your challenge.
Posted by: gvmom
« on: September 26, 2017, 03:39:47 PM »

I agree with GN.... I'm sorry Ciel!  Are you on any food allergy websites that are Canadian specific?  There used to be one, but I can't remember what it was off hand.  Maybe someone on there would be able to give you ideas for sourcing cross contamination free nuts. 

I have to say, the sort of interesting thing that stood out to me in your latest post was that you also get weird stuff from mangos.  I'm not an expert on all the cross reactive stuff, but mango/cashew/pistachio... those all can have some relationship too.   

I really wish the medical/allergy research people would do something about having better testing though.  You are left with uncertainty.... and you aren't alone in that.  There should be a better way to go about this whole process, and I also think allergists should have the pure product on hand for the oral challenges too.  It is sort of weak that they expect patients to try and hunt down this stuff on top of then having to be the guinea pig!
Posted by: GoingNuts
« on: September 25, 2017, 08:18:54 PM »

I'm sorry Ciel.  It does sound like Xcontam was a real possibility; it's a shame to go through all that and still not have a clear answer.   :console:
Posted by: Ciel
« on: September 25, 2017, 08:00:07 PM »

I ate the equivalent of 4 whole cashews. I had some facial flushing, GI pain and diarrhea after the first half cashew, then it got better and we weren't sure if it was a reaction or anxiety so we did another half cashew. I did okay with that and we did a whole cashew, that was okay too so she then gave me 2 whole cashews. That's when the pain got worse and I threw up and more diarrhea. She stopped the challenge at that point but didn't treat the symptoms to see if they would self-resolve. They did, sort of.

Her opinion is that because I tolerated up to 2 cashews without symptoms (or had mild symptoms that might have been anxiety) I don't need to worry about trace amounts. She told me not to eat them and continue carrying epipens but that the odd may contain is probably fine. I'm not sure how I feel about that yet.

It is possible that the cashews I got at Whole Foods were contaminated with peanut or pistachio. I asked staff about the cleaning and filling process for the bulk bins, and the guy went to check in the back for me. There was no warning label on the bin, or the pre packaged containers that I assume are from the same source. That is why I asked in the first place because I thought labels are mandatory. He came back and said they can't guarantee that there is no cross-contamination with peanuts or other tree nuts. I ended up buying some anyway - raw organic unsalted cashews.

The reason for the challenge was to figure out if the reactions I had to cashews and pistachios in the past might actually have been from peanut contamination. I guess I still don't know. Next time I'll have to beg someone in the US to send me the brands you guys recommended. I'll need to find uncontaminated pistachios too.

I used to eat cashews as a kid, pistachios also. Except I thought the way pistachios made my mouth feel was normal. But then, I used to eat peanuts too until anaphylaxis. Mango also feels funny on my tongue.

Posted by: gvmom
« on: September 25, 2017, 06:01:11 PM »

This all sounds concerning. 

Things that stand out to me are:

Your cashews had a warning on them.  Could the cashews, or whatever was the warning, be what caused the reaction?

Was it that you had the equivalent of 1 cashew total?  That isn't that much, and it sounds like the level of reaction, if you were having it in any other place outside of the allergists office, many would say an epipen was in order.

I also am not quite sure how you shouldn't be concerned having vomiting, diarrhea and GI pain after eating such a small quantity of a suspected allergen. 

Every reaction is different.  If it was the cashews, not whatever the warning on the cashews was, I think I would be pretty concerned either way. 

What was the warning for on the cashews?  Was it for peanut or other tree nuts, or a 'may contains' type thing?
Posted by: PurpleCat
« on: September 25, 2017, 05:17:10 PM »

Even if it only means you can tolerate may contains that is helpful too.

Hard to know for sure.  Had you ever eaten them before?  or have you always avoided them?
Posted by: Ciel
« on: September 25, 2017, 02:46:30 PM »

Right after I posted that last update I started vomiting and more diarrhea and intense GI pain. I was drained of energy and a little cold (it was 30+ degrees outside and way too hot for late September). My hands and feet were tingling/falling asleep. But my blood pressure was okay, and other than some continued pain and GI upset it self-resolved, so I'm still all confused. Blood and skin tests are both negative for cashew, and I did tolerate a good amount so she said I don't need to be too concerned with 'may contain' labels. She wants me to see my GI and then we'll try pistachios.
Posted by: spacecanada
« on: September 25, 2017, 11:59:17 AM »

<deleted because of Ciel's later post about the reaction happening afterwards>
Posted by: Ciel
« on: September 25, 2017, 10:25:36 AM »

She stopped the challenge. :(

But the good news is that I got up to the equivalent of 5 4 whole cashews without a severe reaction. The nausea and GI pain was the main thing with mild facial flushing and itching.

Edited to correct the amount I ingested. Two halves make 1, not 2, oops.
Posted by: StridAst
« on: September 25, 2017, 10:06:21 AM »

Good luck Ciel!

I hate the whole stomach pain, flushing, and immediate need to run to the bathroom.  Many foods do that to me, as does emotional stress.  Hopefully that will be the end of things for you!   Let us know the rest :)
Posted by: spacecanada
« on: September 25, 2017, 10:05:23 AM »

Take care, Ciel.  Be sure to let us know the final report. You are brave for doing this!
Posted by: Ciel
« on: September 25, 2017, 09:54:02 AM »

I think it's going okay so far. I just ate two whole cashews!

My stomach hurts though, and I had to run to the bathroom after the first half cashew. She suggested stopping but gave me the option to keep going so we did two more doses. My stomach doesn't feel great and my face and one ear are a little flushed but she thinks that could be nerves. My ear is a bit swollen.

She said people with physical urticarias are harder to gauge sometimes. So we'll see.
Posted by: Ciel
« on: September 25, 2017, 08:15:53 AM »

Thanks PC and gv. Unfortunately I was not able to get those brands in Canada. The ones I ended up with have warnings but my allergist said it's okay.

I just started my challenge, no reaction to touching it to my lips and tongue yet. Fingers crossed!

I'm still pretty nervous though.
Posted by: PurpleCat
« on: August 17, 2017, 05:08:45 PM »

Where did you get peanut free cashews? Were they also free of other tree nuts?

I have a challenge booked next month and I'm wondering if you guys know of a brand? My only other tree nut is pistachio, and we plan on challenging that next if this one goes well, so I suppose peanut free is more important in the grand scheme of things. If both go well my allergist said she'll likely get me to try mango at home.

Navitas Organic was the brand we used.  They also process coconut in the same facility but coconut is off our list now. They were special ordered by a health food store here because I could not find them anywhere, although I found many other Navita products. http://www.navitasorganics.com/superfood-cashew  You can get them on Amazon too....but I was leery buying from Amazon for a challenge.  Also their website in general says they process other allergens.  When you look cashew specific, you find out differently.  I have a bag right here and on the bag it says:  Allergen Information:  Packaged in a facility that handles tree nuts (cashews and coconut).  Contains tree nuts (cashews)

Sunshine was my back up choice but because they are sourced in Africa I was concerned.  The parent company is here in the states.  Same ones as gvmom has found.  Since then, DD has eaten Sunshine Cashews without any issues.
Posted by: gvmom
« on: August 17, 2017, 10:42:20 AM »


I just got these for DS1's oral challenge for cashews.  From what I could find, I thought they should work for my DS.  He is peanut & tree nut allergic.