Hi! My dd, 8, has been allergic to various things in her life (amoxicillin, dog licks from most breeds, etc) and finally went to an allergist today after having an allergic reaction at camp after eating a sandwich made with sunbutter. They use it at the camp to avoid peanut allergies. It figures that MY child would be the one allergic to the sunbutter!
Anyway, the allergist has said that apparently she has a pretty severe allergy to sunflower products of all kinds. I'm guessing he's concerned because now she has to carry an epipen with her in case of a severe reaction (I wasn't at the appointment because she's visiting her dad in Chicago for the summer). She's also slightly allergic to other things, but this is the only bad allergy.
I've never dealt with food allergies before. I plan to research this new thing to me, but how difficult is a sunflower product allergy? Obviously I want to keep her away from sunflower seeds and sunbutter, but how often is sunflower oil used in your typical grocery items? How about in restaurants? Is it cooked with?
Any help/guidance that you can offer to get me on the right track will be greatly appreciated!
OP, welcome to the world of food allergies :-(
The good news is, you've managed to identify what the allergen is. The bad news it it can be a tricky one to avoid sometimes and it isn't one of the top 8 so isn't a priority allergen for food labeling.
I have had food allergies since I was an infant, outgrew some, but have gained others, including some gained as an adult. I am currently anaphylactic to milk, peanuts, tree nuts, and seafood [all fish, all shellfish, molluscs, etc].
My recommendation is there are three distinct sets of info you need to educate yourself on:
- food allergies in general
- anaphylaxsis
- sunflower seed allergy specifically
Learning about "seed allergy" will also probably be helpful, since sunflower seeds fall under that broader category.
Some resources you will likely find helpful:
FARE has an excellent website about food allergies:
https://www.foodallergy.org/
Including a whole section for "newly diagnosed":
https://www.foodallergy.org/life-with-food-allergies/newly-diagnosed
And specifically a packet of information for the newly diagnosed:
https://www.foodallergy.org/life-with-food-allergies/newly-diagnosed/newly-diagnosed-packet
I HIGHLY recommend those resources as a starting point for you. Not specific to sunflower allergy, but to food allergy and anaphylaxsis in general.
They also have a page about anaphylaxsis:
https://www.foodallergy.org/life-with-food-allergies/anaphylaxis
And they have developed an EXCELLENT Food Allergy & Anaphylaxsis Emergency Care plan that a lot of food allergy people (adults and kids) use as their emergency care plan to guide emergency treatment of reactions, including "when to epi":
https://www.foodallergy.org/life-with-food-allergies/food-allergy-anaphylaxis-emergency-care-plan This is worth talking over with your doctor about since it sounds like they didn't give you one already.
Food allergy Canada also has some excellent information:
https://foodallergycanada.ca/
This is a letter to the editor presenting a case history of a patient with sunflower seed allergy (International Journal of Immunopathology and Pharmacology):
http://journals.sagepub.com/doi/pdf/10.1177/0394632016651648 It is from 2016. Worth a read since it includes a fair bit of info about sunflower seed allergy in general, such as:
- Sunflower seed allergies are rare, and only several cases of patients with symptoms of anaphylactic reactions to ingested sunflower seeds have been heretofore described. Bird breeders are among professions especially predisposed to sunflower allergy.
- People may experience allergic reactions after eat-ing whole grain bread because sunflower allergens are highly heat resistant and do not disintegrate, even in temperatures as high as 200°C, not even after 1 h of baking. Additionally, even though sunflower oil is considered to be safe for patients with food allergies because it does not contain proteins, numerous exceptions to this have been confirmed.
Note the comment about sunflower oil. Many oils, when they are "highly refined", are generally considered safe for those with food allergies. Examples include peanut and soy. This is because the refining process for "highly refined" oils removes almost all of the allergy-causing protein from the product, leaving such a little amount that most people with an allergy to the food won't react to the highly refined oil. HOWEVER, a small number of people still do. You should have a conversation with your doctor about whether it is necessary to avoid highly refined sunflower oil or not.
*cold pressed* oil OTOH *does* definitely contain the protein and can be a potential issue [although as you will note in the above paper for some it is not enough to be].
Another case report about sunflower seed allergy:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4311509/ midway through it has general info about sunflower seed alelrgy, and also about the history of SunButter specifically.
Allergic Living magazine is an excellent resource about living with allergies. They have some articles tagged with sunflower allergy:
https://www.allergicliving.com/tag/sunflower-allergy/ From their you can browser to the rest of their very informative site. They have an actual magazine too, which even still comes as a physical paper magazine !
AAFA's Ask the Allergis question on whether a child with sunflower seed allergy can have sunflower oil:
https://community.kidswithfoodaller...h-a-sunflower-seed-allergy-have-sunflower-oil
The Kids with Food Allergy (division of AAFA) website is also an excellent resource for food allergy information:
http://www.kidswithfoodallergies.org/page/welcome.aspx
If you start with the above info, you will be well-informed when you then start Googling and venturing out to find additional information, helping you vett out what is useful and what is less than useful or outright wrong or even dangerous.
In terms of foods... At the very least, get used to reading EVERY label EVERY time. Even if you have safely had the food for years.
A good example: a couple weeks ago I was buying a loaf of the same bread we have bought and safely eaten for years. As I always do, I picked it up off the shelf and read the ingredient list and warning label. Sure enough, "milk" was now one of the ingredients and was added to their "contains" list. Back on the shelf it went and I had to scramble to find safe bread [a challenge, since lots of bread either has milk or a "may contain" warning for milk and/or nuts]. When I got back home I checked the label of my soon to run out loaf and yep no milk listed. Turns out they changed bakeries and changed the recipe a little bit - adding milk. :-( If I had not been in the practice of reading every label every time no matter how many times I have safely eaten the product, I would have brought that bread home, eaten it, and ended up in the ER in anaphylaxsis.
So that means grocery shopping takes a LOT longer than normal.
And when in doubt (e.g. if something were labeled as just having "vegetable oils" so you don't know which ones) back on the shelf it goes.
You will find the allergen shows up in things you did not think would have it. I often wonder "why is there milk in THAT?". Ditto for pesky anchovies. You'll be surprised the number of things an allergen is in once you start looking for it. Sunflower in various forms will be in processed foods and less processed foods, from seeds to oil and in between. Breads, cookies, crackers, pasta, salad dressings are just a few examples.
Because of my allergies I basically have had to cut out most processed foods. So I can pretty much stick to the outside aisles of the grocery store as it were, since for me most baked goods (think the bakery, but also crackers, cookies, etc) are not safe. On the plus side it means being forced to eat much healthier, since most of our meals are cooked from scratch. On th negative side, there are just days when you want the convemience of a microwave dinner and for the most part for me that is just not an option.
You will probably have a different experience since you are not dealing with the same allergies, but be prepared that the foods you buy will change.
One thing you wll have to decide is if you let the allergen into the house at all or not. If you don't let it in, then everyone will be adapting. If you do, then you'll need to establish some rules to ensure the food allergy person stays safe.
In my house (two adults) we allow milk products, but none of the others. We did allow peanut butter for a while, but then my sister became allergic to it too so it is banned from the house. For the milk products, my sister really likes her cheese and milk. And it is easy enough for me to stay away from them since they are rather obvious
But even with them we do some precautions: once the cheese package is opened, it goes into a labeled ziploc in the fridge, even though the cheese container itself is a self-sealing container and doesn't need it. We have two red (red = danger) cutting boards that are ONLY used with dairy products -- those are my sister's cutting boards for her milk-containing things. When they are used she immediately rinses them and puts them into the dishwasher to be cleaned. The only time I handle them is to take them out of the cleaned dishwasher to put back into the cabinet. Anything she uses with milk -- glasses, plates, cutlery, cooking stuff, she is responsible for rinsing/cleaning and putting in the dishwasher. The dishwasher is always run on a sanitize cycle. After an unfortunate incident a few years ago where I came very very close to using her whey powder one morning in my protein shake [a little too sleepy to be making it...], any dairy ingredient-containing containers that could even remotely be confused with something safe gets a big red sticker on it with MILK or DAIRY written on it. This has proved its worth more than once.
Hope this has helped.
Good luck !!
SW
