Daughter just diagnosed with sunflower allergy. Advice?

mom2brooke76

Proud Redhead who doesn't think that Universal is
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Aug 20, 2006
Hi! My DD just got diagnosed with the same thing (reacted to sunbutter). What else is in the family that youve had to avoid? I.e. DD is allergic to cashews so we tested her for pistachios and mangoes since they're in the same family.
We've actually only had to avoid any sunflower products (seeds, butter, oil, lecithin, etc). Basically if it has the word sunflower in the ingredients we avoided it. After talking to the doctor we have played with products with sunflower oil in them and she's done well. The fact that it's so refined apparently doesn't cause her any issues. The first few years were a nightmare though :(
 

mom2brooke76

Proud Redhead who doesn't think that Universal is
Joined
Aug 20, 2006
I have been allergic since 1990 to SunFlower seeds. Understanding that its also a hay fever allergy. You will have serious issues when RAG WEED is high. You have to avoid, Sun Flowers, Daisies, Safflower, Mums etc... pretty much anything in the mum family. Food whys you will need to read labels. Most snack foods and processed foods have sun flower in them. You will have to read labels. Realize that PEANUTS are not a nut.. but they may have sun flower oil. I can eat peanut butter, but I still watch the label. I am not allergic to most nuts, pine nuts or pumpkin seeds. Be ware that you may react to cantalope, Strawberries, Kiwi and some other fruits. I get a scratchy throat feeling with some of them. Nothing as severe as eating sun flowers. Once I had a severe reaction while at a mall. Never realized what it was that caused it. But thankfully I ALWAYS carry benedryl with me as well as Claratin REDI tabs. The Redi Tabs were recommended by a allergy specialist because they do not need to be swallowed, in the event I could not swallow a benedryl I could get something in the system. Best thing I can tell you, no french fries, no chips of any kind at a restaurant.
In the restaurants we frequent, I know the ingredients and regularly check them. Most chips can have sunflower oil in them, but McDonald's and Chick-fil-a fries are ok for my daughter.
 

1988Polar

Earning My Ears
Joined
Jul 24, 2017
The problem with sun flower seeds is that it is not one of the top 8 allergens. The top allergens are required to be listed at the bottom of the ingredients of food products. Things like eggs, and peanuts etc. are listed. Without these, you will need to read VERY carefully EVERY label of every food that she eats. I agree to talk to the doctor but also do your own research to look for hidden sources. Be sure she has that epi pen on her ay all times. Most 8 year old are ok to carry it themselves if the school will allow it.





I learned today that MANY companys use SunFlower Oil under the pretense of VEGETABLE OIL. We need to find a way to get sunflower oil added to one of the 8 top allergens
 
  • Random Ninja

    DIS Veteran
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    Jan 14, 2012
    I learned today that MANY companys use SunFlower Oil under the pretense of VEGETABLE OIL. We need to find a way to get sunflower oil added to one of the 8 top allergens
    This is the same of soy oil as well. Soy is a Top 8 allergen but soy oil does not have to be listed like other allergens as it's considered to be non-allergenic. Some of us allergic to soy still do react to soy oil though.

    Vegetable oil does have to specify what types of oil are included. Companies often list multiple types so they can change the oil without changing the label. There might be only one or all of the oils listed.
     

    1988Polar

    Earning My Ears
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    Jul 24, 2017
    This is the same of soy oil as well. Soy is a Top 8 allergen but soy oil does not have to be listed like other allergens as it's considered to be non-allergenic. Some of us allergic to soy still do react to soy oil though.

    Vegetable oil does have to specify what types of oil are included. Companies often list multiple types so they can change the oil without changing the label. There might be only one or all of the oils listed.

    I know many people too who are allergic to soy too. However, I have not heard of soy causing Anaphylaxis before. Is this part of your soy allergy? I always worry about everything I eat. Sometimes I take a tiny amount and place it on my wrist, to see if I react when I am out.
     

    Random Ninja

    DIS Veteran
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    Jan 14, 2012
    I know many people too who are allergic to soy too. However, I have not heard of soy causing Anaphylaxis before. Is this part of your soy allergy? I always worry about everything I eat. Sometimes I take a tiny amount and place it on my wrist, to see if I react when I am out.
    Not all allergic reactions are anaphylatic but reactions can change at any time. It's better to avoid an allergen even if the reaction is minor as reactions can get worse. In my case, soy oil causing itching all across my torso, arms, and head as does contact to soy protein and dairy. I have multiple airborne anaphylaxis allergies so I would prefer not to have soy progress to that point too.
     

    1988Polar

    Earning My Ears
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    Jul 24, 2017
    Not all allergic reactions are anaphylatic but reactions can change at any time. It's better to avoid an allergen even if the reaction is minor as reactions can get worse. In my case, soy oil causing itching all across my torso, arms, and head as does contact to soy protein and dairy. I have multiple airborne anaphylaxis allergies so I would prefer not to have soy progress to that point too.



    Yes I am aware not all. However 90% or more of sunflower are anaphylatic. I have never heard of someone with a soy allergy having the same issue.
     
  • nicoled315

    Earning My Ears
    Joined
    Oct 15, 2018
    I would try food intolerances maybe to Gluten(Wheat),Dairy(Casein, Milk, lactose, Whey) or Soy proteins. I recently found I’m allergic to Sunflower as well after a year ago of being pregnant. I was having issues of Gluten 2010 and have change but found my stomach didn’t like dairy either. I was GF,CF,SF for 2011-2016 but wanted to re-introduce dairy and Soy and had relived my worse fears of stomach distress. I am doing self home evaluation again but taking out the dairy and soy again to see if my allergy symptom to sunflower subsidizes. I have found if you are intolerant to dairy and gluten you can’t digest certain proteins like histidine to help with deflecting allergy reaction to certain things like sunflower. I will continue to do this experiment for a month and I will post my results. But I have good suspicion that it’s a food intolerances because if you can’t digest a protein you will have many other complications than just a few you are experiencing. I also am a anemic of low iron and the falls with the food intolerances to gluten that I hear and read. But still food indigestion than to rule out dairy to know.
     

    cmwade77

    DIS Veteran
    Joined
    Jul 1, 2005
    I would definitely be concerned, more and more places are cooking using sunflower oil for precisely the reason sunbutter was used, to avoid other allergy issues. I am not sure how to best handle this, but I thought someone should mention this in case anyone is unaware.
     

    Starwind

    DIS Veteran
    Joined
    May 7, 2014
    Yes I am aware not all. However 90% or more of sunflower are anaphylatic. I have never heard of someone with a soy allergy having the same issue.
    People with soy allergy can have anaphylactic reactions.

    According to FARE (https://www.foodallergy.org/common-allergens/soy):

    QUOTE

    Soybean allergy is one of the more common food allergies, especially in babies and children.

    Soybeans are a member of the legume family. Beans, peas, lentils and peanuts are also legumes. Being allergic to soy does not mean you have a greater chance of being allergic to another legume, including peanut.

    Keep a wallet sized reference card with you of all the technical and scientific terms wherever you go with a How to Read a Soy Label card.

    Allergic Reactions to Soy
    Allergic reactions to soy are typically mild, but all reactions can be unpredictable. Although rare, severe and potentially life-threatening reactions can also occur (read more about anaphylaxis).

    END QUOTE

    In North America, most soy allergies occur in infants and young children and in many cases [but not all] are outgrown while still a child.

    SW
     

    Starwind

    DIS Veteran
    Joined
    May 7, 2014
    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! :goodvibes
    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.kidswithfoodallergies.org/blog/ask-the-allergist-can-a-child-with-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
     
  • Jessica Kuhlman

    Earning My Ears
    Joined
    Nov 8, 2018
    Hi there! I thought I'd share some helpful information: I have had a severe Sunflower allergy all my life, I go into anaphylactic shock and suffer from severe GI problems (vomiting, chest tightness, trouble breathing/swallowing, etc). BUT it has been fairly easy for me to completely avoid them. I am now a pro at eating "whole" whenever I can and ALWAYS read food labels. I would stay away from bakeries because of the cross contamination that can happen, and really watch salad bars!

    I wanted to mention though the concern of cross reactivity of the mustard seed. I will post an article below that my allergist LOVED that I brought to his attention. About two years ago I developed a severe reaction to Mustard, because apparently the proteins in the Mustard seed are very similar to those of the sunflower seed. Now this has been an extremely hard seed to keep track of, it is in items like BBQ sauce, salad dressings, pickled foods, etc. I urge you to have your daughter tested for this...and if it comes back negative it doesn't mean she won't develop it later in life. I was 24 the first time I had an allergic reaction to mustard. I now have to carry two epipens and an inhaler.

    I hope this helps you and your daughter!


    https://www.aaaai.org/ask-the-expert/cross-reactivity-seed
     


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