Food Allergy Support

Specific Food Allergies => Peanut/Tree Nut Allergy => Topic started by: PurpleCat on January 25, 2017, 08:04:15 AM

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Title: Walnut Challenge!
Post by: PurpleCat on January 25, 2017, 08:04:15 AM
Dose 2, 1/4 tsp, so far so good.

DD likes the taste!  That is half the battle.

I am starting to relax.  DD begged me to come last night and other than feeling tired and weak, I'm OK. 
Title: Re: Walnut Challenge!
Post by: hezzier on January 25, 2017, 08:12:54 AM
Good luck to both of you!
Title: Re: Walnut Challenge!
Post by: PurpleCat on January 25, 2017, 08:39:48 AM
Up to 1 tsp!  Still good.  Playing's Cat.
Title: Re: Walnut Challenge!
Post by: ajasfolks2 on January 25, 2017, 09:59:21 AM
 :thumbsup: :thumbsup: :thumbsup: :thumbsup:
Title: Re: Walnut Challenge!
Post by: PurpleCat on January 25, 2017, 10:12:32 AM
2 tsp, walnuts good.  Going for some full nut pieces next!  Must go crack shells with nurse.  DD is happy!
Title: Re: Walnut Challenge!
Post by: PurpleCat on January 25, 2017, 10:28:21 AM
Going so well, breaking protocol

Going to lab for blood draw and doing skin test for almond pecan and sunflower.  We already have a cashew challenge in April, hoping to do some summer challenges on these 3...

 :happydance:

Title: Re: Walnut Challenge!
Post by: becca on January 25, 2017, 11:25:12 AM
That's great PC!!  Wohoo!
Title: Re: Walnut Challenge!
Post by: gvmom on January 25, 2017, 11:36:51 AM
It sounds like things are going great!  Congrats to your DD!

I was trying to figure out from your posting how many doses your DD ended up with.... how much was the final dose?  Also was wondering what the breaking protocol was?  Was that just that they didn't have you wait in the office after the last dose? 

Was there a guideline for the days going forward as to how much walnut to eat.... or not ... or anything?

Just asking based on our own interest in possible walnut challenge.   
Title: Re: Walnut Challenge!
Post by: hezzier on January 25, 2017, 11:38:13 AM
Great news! 
Title: Re: Walnut Challenge!
Post by: PurpleCat on January 25, 2017, 12:36:24 PM
It sounds like things are going great!  Congrats to your DD!

I was trying to figure out from your posting how many doses your DD ended up with.... how much was the final dose?  Also was wondering what the breaking protocol was?  Was that just that they didn't have you wait in the office after the last dose? 

Was there a guideline for the days going forward as to how much walnut to eat.... or not ... or anything?

Just asking based on our own interest in possible walnut challenge.


Hi!

Dosing was:  1/8 tsp, 1/4 tsp, 1/2 tsp, 1 tsp, 2 tsp, 2 tsp, all ground up, and then a medicine measuring cup of small pieces.

15 minutes between each dose and a repeat of vitals.

The breaking of protocol was that they only do a food challenge for one food at a time and no other testing.  So yea, we laughed because the doctor was so excited for DD.  She threw her hands up and said, in this case, let's break protocol.  So between the two 2 tsp doses, we left (with our epis_ and went upstairs to the lab for a blood draw and then after DD ate the small pieces, they did the skin prick tests (normally a no no) during the 15 minute wait.

Going forward, the allergist wants DD to have walnuts at least twice a week and not two days in a row, but more spaced out.  The good news is DD really liked them so she is looking forward to eating them.  The nurse said she only needs to eat a small portion similar to the last part of her challenge.

Brownies with walnuts maybe on the menu this weekend!
Title: Re: Walnut Challenge!
Post by: Macabre on January 25, 2017, 12:36:46 PM
This is awesome!
Title: Re: Walnut Challenge!
Post by: PurpleCat on January 25, 2017, 12:39:50 PM
So the skin prick test results were:  Almond - small welt some red, Sunflower - tiny welt some red, Pecan - almost nothing, Histamine - medium welt

That plus the results of blood-work for the same allergens will determine what to test this summer.  We plan to discuss that when we go in April for the Cashew challenge.

Meanwhile, I have permission to schedule 2 challenges for the summer before the schedule get filled up.  I'm hoping for June and July.  Need to call back, the desk staff went to lunch before we left.
Title: Re: Walnut Challenge!
Post by: gvmom on January 25, 2017, 01:20:34 PM
Thank you for the info PurpleCat!

Really, such great news!

Title: Re: Walnut Challenge!
Post by: Janelle205 on January 25, 2017, 01:47:26 PM
Yay!  Such good news for you and DD!

And I'm glad that she liked the taste as well.  Walnuts are the one nut I have to avoid.  It isn't a severe allergy (I don't worry about cross-contamination), but the allergist tells me that they aren't actually supposed to "taste like burning."
Title: Re: Walnut Challenge!
Post by: hedgehog on January 25, 2017, 03:35:03 PM
 :happydance:  :happydance:  :happydance:
Title: Re: Walnut Challenge!
Post by: GoingNuts on January 25, 2017, 04:51:05 PM
Yay!  Fantastic news! :happydance:
Title: Re: Walnut Challenge!
Post by: PurpleCat on January 27, 2017, 12:30:20 PM
Follow up test results!  Super promising!

Total IGE 1055!!!!!!!  Holy cow!  For DD this is low and I am so excited to see this.  Last year she when we hoped it had dropped she was still over 1300.

Pecan -  (0 W, 2 flare)  <.10 class 0, she can try pecan at home...actually the doctor said, just start eating pecan
Sunflower - (1 W, 2 Flare)  1.19 Class 2
Almond - (3 W, 10 Flare)  .73 Class 2

Doctor wants to challenge those 2 this summer!
Title: Re: Walnut Challenge!
Post by: spacecanada on January 27, 2017, 03:54:09 PM
Congratulations on passing the challenge and for promising test results.  Yay!
Title: Re: Walnut Challenge!
Post by: MaryM on January 29, 2017, 08:20:27 AM
Great news!!!
Title: Re: Walnut Challenge!
Post by: PurpleCat on February 14, 2017, 05:45:53 PM
So, DD has been eating English Walnuts by themselves or in foods like stuffing.

Today she had cookies I made using Black Walnuts.  She came home from school and said she did not eat the cookies because the first one made her mouth itch.  I am glad she did not.

But now what?  Are Black Walnuts that different from English Walnuts.  They are from Hammons, a company that only processes Black Walnuts, no other nuts.

I messaged the allergist.  She is not sure and is wondering if DD might have OAS to Black Walnut.  She is going to get in touch with some colleagues at Children's Hospital to see what they think.   

Sigh.....it's never easy.  And now if I have to add the question, what kind of walnuts are they....manufacturers are really going to roll their eyes and be annoyed.
Title: Re: Walnut Challenge!
Post by: hezzier on February 14, 2017, 05:59:24 PM
I don't think I knew there were 2 varieties.  It will be interesting to see if the Dr. comes back with any info.  Are you going to go back to giving her the English ones?
Title: Re: Walnut Challenge!
Post by: PurpleCat on February 14, 2017, 06:27:57 PM
Yes, the allergist said she should continue to eat those.
Title: Re: Walnut Challenge!
Post by: gvmom on February 14, 2017, 06:32:05 PM
http://www.aaaai.org/ask-the-expert/cross-reactivity-black-walnut-english-walnut

I found the link above...... don't know if it is helpful or not.

This sort of reminds me of the old thread from ages ago about drupes/tree nuts.......

.... I have a feeling to really "know" you almost have to become an expert ..... and in your case, an expert on walnuts!
Title: Re: Walnut Challenge!
Post by: GoingNuts on February 14, 2017, 08:15:38 PM
Good Lord. English vs. Black - who knew?
Title: Re: Walnut Challenge!
Post by: gvmom on February 15, 2017, 11:07:19 AM
Just in skimming around, it does look like there could be big differences between the two types of walnuts. 

What I wonder is if typically whatever is used for FA testing is English, and that then is theoretically supposed to cover all Walnut..... when what they should do is break it up into Black and English.... separately tested. 

I would imagine, given that DS2 was allergic to "egg".... but then tested for the white vs yolk ..... because some things weren't making sense with his allergy.  He was allergic to yolk, which somehow was confounding.

Anyway..... do you have any of the lab results that list the info about allergens?  Is there any sort of listing of Walnut.... and if there is anything like English or Black as sort of a sublisting with separate numbers for each? 
Title: Re: Walnut Challenge!
Post by: ajasfolks2 on February 15, 2017, 12:17:22 PM
Black walnuts are not so readily available in many areas and usually more expensive, is what I've noticed.

I would suspect that English walnuts are what is in most stuff made with walnuts?  (Have not googled, just assuming due to cost and availability)

Having said that, who knows what other nuts (or peanuts) might be pacakged on same lines with either of those types of walnuts.  So that might complicate things for some?

FWIW, Black walnuts are more flavorful to me than reg Eng walnuts.





Title: Re: Walnut Challenge!
Post by: gvmom on February 15, 2017, 12:29:25 PM
So, just for fun, I dug around and found the last labs for DS1.  On it they had Walnut (F256) ... which when you just plug that into a google search comes up (first result) http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=3489 and it lists Black Walnut.

Now, most info I can find talks about most people eating and using the English Walnut.  I'm sure it is that typically light brown walnut meat that you just find in most packs in baking aisles right?

What were your DD's numbers again for walnut that led to her taking an oral challenge?  Were they low, but low enough to make the doc think an oral challenge was okay, or were they at 0?

I'm wondering if you could lab test low, with Black Walnut, and not be allergic to English Walnut.  So, if you do the oral challenge with English then you pass, but still have an allergy to Black Walnut..... because low numbers don't always mean you pass the oral challenge.

Is there a way to get more specific labs done? 
Title: Re: Walnut Challenge!
Post by: ajasfolks2 on February 15, 2017, 02:21:21 PM
Have they isolated anaphylaxis causing walnut protein component yet (like they have for peanut) and do they test for that yet?

Just wondering . . . rusty on testing stuff these days.

Title: Re: Walnut Challenge!
Post by: PurpleCat on February 16, 2017, 11:03:45 AM
[url]http://www.aaaai.org/ask-the-expert/cross-reactivity-black-walnut-english-walnut[/url]

I found the link above...... don't know if it is helpful or not.

This sort of reminds me of the old thread from ages ago about drupes/tree nuts.......

.... I have a feeling to really "know" you almost have to become an expert ..... and in your case, an expert on walnuts!


According to this link there are 4 kinds of walnuts!!!! "There are scant data regarding cross-reactivity between the four walnut species (English, black, Asian butternut, and American butternut). The data that do exist imply that there is strong cross-reactivity between all four (see abstracts copied below). Thus, one would not expect to find isolated sensitivity to black walnut."
Title: Re: Walnut Challenge!
Post by: gvmom on February 16, 2017, 11:13:01 AM
Thus, one would not expect to find isolated sensitivity to black walnut.

Until the allergy world somehow can explain a lot of things that are not expected that somehow we have ended up dealing with I am not sure I would necessarily think a person couldn't have an "isolated sensitivity" to anything.

But, yeah, it is crazy to find out just how much there is to know about walnuts.

Did you hear back anything from any docs?
Title: Re: Walnut Challenge!
Post by: PurpleCat on February 16, 2017, 11:18:39 AM
DD's testing history:  (the science stuff I linked about the proteins I don't really understand....I am more art like, wish I was more science based, it seems so interesting... but I do know because  those numbers were low is why the allergist opted to food challenge walnut.

Walnut component testing done in September:
Walnut Food IGE 0.36
rJug r1 Walnut 0.1       http://www.phadia.com/en/Products/Allergy-testing-products/ImmunoCAP-Allergen-Information/Food-of-Plant-Origin/Allergen-Components/rJug-r-1-Walnut/
JUG R 3 LTP Walnut 0.1   http://www.phadia.com/en/Products/Allergy-testing-products/ImmunoCAP-Allergen-Information/Food-of-Plant-Origin/Allergen-Components/rJug-r-3-Walnut/

After the initial testing when she was little, we rarely tested individual tree nuts.

Historical CAP RAST results for "English Walnut":
2009 Class 2 0.97
2014 Class 2 1.47


Historical CAP RAST results for "Walnut" (no clue what kind but assumed black since tested in same year as English):
2009 Class 1 0.58

Still have not heard from the allergist, but I am assuming it will take a few days for the doctors to communicate back and forth.
Title: Re: Walnut Challenge!
Post by: rebekahc on February 16, 2017, 12:11:05 PM
If you live in the Eastern US, then I might suspect a pollen/OAS type sensitivity to black walnut since it's native there.  If the allergenic walnut proteins truly are the same or similar across all species of walnut, it might explain why she reacts to one but not the other.
Title: Re: Walnut Challenge!
Post by: Macabre on February 16, 2017, 12:33:40 PM
I've tested positive to black walnuts but not English walnuts.
Title: Re: Walnut Challenge!
Post by: PurpleCat on February 16, 2017, 01:34:24 PM
Yes!  We live in the East and DD has horrible tree pollen allergies that are more manageable after 2 years of allergy shots that include tree pollen.

Mac, do you eat English Walnuts?  If so, how do you handle walnut as an ingredient?

I can't imagine a customer service person is going to know or be able to find out what kind of walnut is in a food's ingredient.
Title: Re: Walnut Challenge!
Post by: Macabre on February 17, 2017, 08:34:13 AM
I only order from Tierra Farms. The last few years I haven't really ordered them but once or twice.
Title: Re: Walnut Challenge!
Post by: PurpleCat on February 17, 2017, 01:12:48 PM
Thank you for the source!