Sunflower/Sesame/Tree Nuts

[Sue]

I'm hoping this board is still active.  I've scrolled through and come upon a few hyperlinks that didn't work.

Blood tests a year ago revealed I have SEVERE sunflower allergy as well as allergy to sesame and tree nuts.

In the past few months I've had reactions to fried foods.  Both times the food was fried in either vegetable oil or a combination of vegetable/canola oil.

Every reaction I have begins 8 hours after eating, starts with explosive diarrhea followed immediately by hives, itching, and bright red skin.  Most of the time I can control the reaction by taking 6 benedryl.  The last reaction I had I used my epi-pen for the first time ever, I was that scared.  I got really dizzy and was afraid of a drop in blood pressure.

I'm trying to live life right, but it's so hard.  I read labels.  I ask in restaurants. 

But, reading this forum has shown me that ingredients like sunflower and sesame are not listed.  I do try to avoid foods or rubs that use "spices", since I don't know what those spices are.  Makes it hard to BBQ.  I ate prime rib before my last reaction.  Guess it was rubbed with something? 

I'm sure you all understand how frustrated/angry/scared I am.  How do you deal with this?  Do I just sit in my house and eat boiled chicken and rice?  How can I travel? 

Hoping someone is still out there reading - I could use some support.

[GoingNuts]

Hi Sue!

I'm glad you found us - we are indeed still active!

Wow, those reactions sound scary.  And such a delayed reaction is pretty unusual, but not unheard of.

I don't know a lot about sunflower, but you are correct - if you are in the US they are not considered "Big 8" allergens (though we may slowly be making some progress with sesame).

My son is sesame allergic, but (knock wood, poo-poo-poo) doesn't seem to be particularly sensitive to X-contam like he is with PN and TN.  We avoid foods that blatantly contain sesame, but I know that when he is out on his own (he is 22) that he doesn't worry about it.  I'm hoping some of our seed allergic members will chime in who can give you better advice.  We definitely have members who are allergic to sesame, and at least one who is allergic to sunflower.

Keep reading - I'm sure someone will pop in with some suggestions for you.

[Know your struggle]

Those are just 3 of the allergies we deal with.

McCormick is awesome at labeling and I trust their labels.  You should call them for your own piece of mind.  I do use their dry packets and shakers of flavorings for my meats and fish.  I read every label.  I also use their taco packets.

Sunflower can be hidden as a vegetable oil - if you can not tolerate oil.  Some people can.

Seeds can be listed, or can be hidden as a spice or as a flavoring.  I make our own dips and salad dressings.

Treenuts are legally labeled on food but not in personal care items and makeup.  Tread carefully.

Sesame flour has become popular to allow bread makers to claim more nutrients.  We trust pepperidge farms for bread.   They label for sesame even if it is cross contamination.  And Kings Hawaiian bread, mini sub rolls, dinner rolls, hamburger buns and hot dog buns are all made in a sesame free plant!

Check your cosmetics, lotions, soaps, hair products, etc....  Sesame is showing up more and more in these - most recently a lip gloss (and those labels are a challenge to read!)

The most important thing you need to do is to always ask the manufacturer if you are not sure, and when you get their response, weigh it and trust your instincts. 

Some companies act like you are stealing their secrets!  They will tell you it is proprietary.  I just went through this with General Mills (who in the past has been most helpful).  The woman was tap dancing all over the conversation claiming proprietary rights and then said she'd have to reach out to someone else to email me and that it would be a week or 2.  Well the second person emailed me back within an hour with a thorough response.....I think the first person needs more training!

Also, be sure to let your pharmacist know about your allergies and still question each new prescription.  We've even had our allergy doctor recommend a cream for eczema that turns out to contain tree nuts!

Here is a weird one....Once I needed to use a lice treatment....and could not due to allergies....I can't remember which allergen was the issue...this is just to show you how important it is to check!

Dining out gets better with time and experience.  I suggest a typed "chef's card" we make our own and on photo copy paper.  Nothing fancy.  The waiter can take it to use at the register and then give to the kitchen staff so they can (and we have been told they do) post it in the kitchen while preparing your food!  So easy and so appreciated by the staff.  Where we live the kitchen people have been fantastic and made alternate suggestions to a recipe to make it safe.  We always have a menu item or 2 we are interested in when providing the info instead of expecting the restaurant to address the entire menu.  Kind of like kids who need to know every kind of ice cream offered and yet order vanilla - they waste your time and annoy you!