# Daughter just diagnosed with sunflower allergy. Advice?



## mom2brooke76

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!


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## ctl

I'm pretty sure that many potato chips are cooked in sunflower oil, and restaurants deep fry in various vegetable oils, sunflower being among the popular ones. 'm reading the back of my DH's Quakes Rice snacks and they have sunflower oil in their ingredients list. 
I would ask her allergist for a comprehensive list and if he has any advice on  school lunches etc.  This is definitely a difficult one, but if she is so allergic that she needs to carry an epi-pen then it's best to banish all foods that have sunflower oil on the label from your home and warn her friends about cookies and birthday cupcakes etc.


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## MSSANDRA

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.


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## mom2brooke76

Thanks everyone for the advice! We've talked to the doctor, but they just say to watch for the pretty obvious stuff. I've also started to research online, but unfortunately since sunflower allergies aren't nearly as common as others, the information seems to be lacking. And yes, her epipen will be with her at all times (hopefully in school too depending on their policy.......otherwise it will be with the nurse/office).

Those breakouts can be scary! Fortunately she's never had one that benadryl didn't fix, and hopefully never will. Our scariest breakout so far was when we were on a plane taxiing down the runway. Right before we got in the air I noticed that she was scratching (at this point she hadn't really had a problem with breakouts often before). I assumed it was her eczema (she gets it badly on the inside of her elbows and backs of her knees) and just asked her to try not and scratch. Well, when I got a look at it her entire arm was covered in welts and it was quickly spreading! I didn't have benadryl on me (now I ALWAYS do), so had to try and get an FA. Unfortunately there was bad turbulence so the pilot made them all sit down and none would answer my call. Finally when they did I simply asked if they had Benadryl, not knowing how complicated that would be. They had to call the ground to get permission, then attempt to find a nurse onboard and then a doctor, who both confirmed that she was having a reaction of some sort. Finally they offered me capsules, but at that time she couldn't swallow pills yet, so they found a mom with liquid Benadryl (they didn't recommend that I take it from her, but at that moment I didn't care). Anyway, all drink/snack services were suspended from the flight (apparently they do that when there is a medical emergency) and about 10-15 people were waiting on her as soon as the plane door opened (firemen, paramedics, Southwest spokespeople). I hope to never experience that again!


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## Alexsandra

Hi there, 
I have suffered with food allergies ever since I was little. I am severely allergic to anise and cold cuts (the allergist donesn't know what allergen in the cold cuts: too many variables). I also now have a son who is severely allergic to Hazelnuts. At first I took my own allergies pretty lightly but when I had my son diagnosed with a nut allergy everything changed.

Hearing your story, it makes me cringe. I reminds me of me and my reactions to the information when it was first given to me. Unfortunately,  doctors don't give enough information about how to react at first sign of an allergic reaction. And they especially don't give the support needed. It is really stressful when you or your child has an allergy. You have to be on high alert all the time. You have to become obsessed with food labels, what is being served at a party and what, where or who can cause your child to be at risk. It is stressful for a mom and can feel overwhelming. When my son was diagnosed I felt guilty, alone and scared to make a mistake knowing that his life was at stake. Just knowing how severe a food allergy can be, how could I protect him from the having one, how could I protect him from other!? 

I just want to give you some advice and the right tools to help you make the right decisions at the right times. And to give you the support that I did not have.

First I suggest you read this article written by a mom who is an allergist whose 3 kids have severe food allergies. She explains what an allergy is, how the body chemically reacts to the allergen and what the epinephrine injection does to stop the reaction:
http://theallergistmom.com/2012/01/12/the-science-of-anaphylaxis-an-allergic-storm/
Her whole blog is just wonderful and she tells her side of the story on how she is living with 3 allergic kids. She gives medical and emotional support.

Next I wanted to tell you that my son's allergies started out like your child's. Just skin rashes and/or stomach disturbances. I did not know then but his reaction counts as an anaphylaxis reaction. I should have injected him the epinephrine right away but I would just give him Benadryl instead, thinking this was the right thing to do. His allergies quickly progressed to more severe reactions the next  time.

He went from skin rash to this:
He had been given a cake that contained no nuts at a family party recently but it must have had traces of hazelnuts. He started screaming in pain crying out that t he did not feel good and that it hurt when he swallowed. I was terrified! But I did not hesitate, I injected him with the Epipen needle within minutes and called an ambulance. When we got to the hospital, the doctor had to give him a second injection as the allergy had come back. He told me that I had saved his life by not waiting to inject him. I can't tell you how that affected me. First I felt guilty for not being more careful about what he was eating. I had trusted the person who had brought the cake and told me there were no nuts in it but that was my first mistake. Never take chances! Next it taught me another valuable lesson: always administer Epipen at first sign of reaction, never wait. Like the doctor said, I had saved his life. I always was scared to give it to him in the past thinking "oh I'll give him Benadryl and it will stop the reaction". Boy was I wrong. As you can see in the article Benadryl only reduces the external inflammation and skin rashes. It does nothing internally where the danger really lies.

Here are the signs of anaphalactic reactions so you know when to inject: 
An anaphylactic reaction can involve any of the following symptoms, which may appear alone or in any combination, regardless of the triggering allergen:
-Skin system: hives, swelling, itching, warmth, redness, rash
-Respiratory system (breathing): coughing, wheezing, shortness of breath, chest pain/tightness, throat tightness, hoarse voice, nasal congestion or hay --fever-like symptoms (runny itchy nose and watery eyes, sneezing), trouble swallowing
-Gastrointestinal system (stomach): nausea, pain/cramps, vomiting, diarrhea
-Cardiovascular system (heart): pale/blue colour, weak pulse, passing out, dizzy/lightheaded, shock
-Other: anxiety, feeling of impending doom, headache, uterine cramps, metallic taste

I am telling you this not to scare you but to provide you with the information I was lacking to make the right decision.

Check out Allergic Living at http://www.allergicliving.com/ for information and support groups to help you in find ways to better live with your child's allergy.

A child can grow out of the allergy cause his/her body is still is changing so keep your fingers crossed. I sure hope mine will grow out of his.
I send you tons of pixie dust and hope all turns out for the best!


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## mom2brooke76

Alexsandra- Thanks so much for that information! I attempted to join that forum yesterday, but am still waiting on approval.

Yes, this whole thing is scary! I'm even more stressed out now because for the last 3 years she's been flying with me to Chicago to see her dad. All this time I've accompanied her back and forth due to not feeling that she was old enough to fly as an unaccompanied minor. She's now easily flown 40-50 times, so she gets it. Well, her dad told her that once she was 8 that she would start flying alone. When he told me that recently I just about died (she's ADHD and may have Asperger's) because emotionally I don't feel that she's ready, but agreed to try it once to see how it went, since I'll never know how she'll do unless we try. That was all fine and dandy until I found out about this allergy yesterday! We generally try to fly Southwest and I called them today to find out if they would either give/assist her with her epipen should an allergy issue arise and they said that they can't. I can't find an airline that will offer any kind of assistance. I'm sure it's due to liability, but imagine what could have happened had I not asked?! She just turned 8 and with her learning disabilities, etc, there is no way that I could rely on her to give herself that injection. Heck, I can't even get her to take her inhaler for cough variant asthma herself, and that isn't life threatening! Her dad may hate to pay for both of us to fly, but until she gets to an age where she can be relied upon to know what to do I won't be ok with her flying alone.


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## HFred

As a parent of a child allergic to eggs, peanuts, tree nuts, sesame and (used to be dairy until he outgrew it at age 5), I understand your fear. Sunflower is very rare and unusual. Sunbutter is our go to in place of pb or treenut butters.

My son was diagnosed prior to the FDA labeling rules changing so I understand the difficulty in reading a label when an item is not on the Top 8. I still have to check all ingredient lists for sesame! It will become second nature with you over time. It will never stop frustrating you however! Train her now to tell anyone she comes in contact with that she is allergic...teachers, waiters at restaurants, grandma and grandpa. I am a big component of teaching my son to self advocate. If I forget, he has to step up to protect himself b/c I won't always be there to do it. 

Ask the allergist if there is a list of "code words" for sunflower (i.e. when my son was allergic to dairy and prior to the FDA change...I had to look for whey, casein, dairy, milk, etc...egg was albumin, yolk, etc...). Never trust a product. Just because it is safe on one grocery trip, it may not be the next time or from a different store. Production lines change all the time and different production plants of the same product have different things run on the same lines.

If you are not yet a member of FAAN, it is worth joining at least for a year. Their resources are fantastic and you can call them with questions. I would not let an 8 year with a life-threatening allergy fly alone. Too many variables to contend with! Your daughter has the right to have her Epi with her at school. If you have to fight for a 504 to get it, then do it. My son has a Food Allergy Action plan only but he can carry and will this year for the first time. It is a small school and the staff knows him well and are open to suggestions so I have not had to "fight" for his safety.

Good luck. It is scary and worrisome but it will become part of yours and hers routine. If she has never had a full allergy testing done, do it. She and you will learn to handle it and live with it and be fine! My son amazes me everyday with how he takes it all in stride!


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## mom2brooke76

HFred said:


> As a parent of a child allergic to eggs, peanuts, tree nuts, sesame and (used to be dairy until he outgrew it at age 5), I understand your fear. Sunflower is very rare and unusual. Sunbutter is our go to in place of pb or treenut butters.
> 
> My son was diagnosed prior to the FDA labeling rules changing so I understand the difficulty in reading a label when an item is not on the Top 8. I still have to check all ingredient lists for sesame! It will become second nature with you over time. It will never stop frustrating you however! Train her now to tell anyone she comes in contact with that she is allergic...teachers, waiters at restaurants, grandma and grandpa. I am a big component of teaching my son to self advocate. If I forget, he has to step up to protect himself b/c I won't always be there to do it.
> 
> Ask the allergist if there is a list of "code words" for sunflower (i.e. when my son was allergic to dairy and prior to the FDA change...I had to look for whey, casein, dairy, milk, etc...egg was albumin, yolk, etc...). Never trust a product. Just because it is safe on one grocery trip, it may not be the next time or from a different store. Production lines change all the time and different production plants of the same product have different things run on the same lines.
> 
> If you are not yet a member of FAAN, it is worth joining at least for a year. Their resources are fantastic and you can call them with questions. I would not let an 8 year with a life-threatening allergy fly alone. Too many variables to contend with! Your daughter has the right to have her Epi with her at school. If you have to fight for a 504 to get it, then do it. My son has a Food Allergy Action plan only but he can carry and will this year for the first time. It is a small school and the staff knows him well and are open to suggestions so I have not had to "fight" for his safety.
> 
> Good luck. It is scary and worrisome but it will become part of yours and hers routine. If she has never had a full allergy testing done, do it. She and you will learn to handle it and live with it and be fine! My son amazes me everyday with how he takes it all in stride!




Thanks for the info! It's frustrating that it's such a rare allergy since it makes it that much more difficult to find out lots of information. She had full allergy testing done yesterday, and fortunately the only severe allergy was to sunflower products. She had others, but none were considered to be "bad" thank goodness! I will definitely check into FAAN


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## ekatiel

You've gotten a lot of good information here.  One thing you may want to ask the allergist is about sunflower seed oil.  Many people with peanut and soy allergies can actually tolerate peanut and soy oils (unless they are the "gourmet" cold-pressed versions).  It may be that your daughter can tolerate sunflower seed oil (do NOT try it on your own, though, ask your allergist!).  If she can tolerate the oil, then avoiding sunflower seeds should be easier. --Katie


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## Alexsandra

mom2brooke76 said:


> Alexsandra- Thanks so much for that information! I attempted to join that forum yesterday, but am still waiting on approval.
> 
> Yes, this whole thing is scary! I'm even more stressed out now because for the last 3 years she's been flying with me to Chicago to see her dad. All this time I've accompanied her back and forth due to not feeling that she was old enough to fly as an unaccompanied minor. She's now easily flown 40-50 times, so she gets it. Well, her dad told her that once she was 8 that she would start flying alone. When he told me that recently I just about died (she's ADHD and may have Asperger's) because emotionally I don't feel that she's ready, but agreed to try it once to see how it went, since I'll never know how she'll do unless we try. That was all fine and dandy until I found out about this allergy yesterday! We generally try to fly Southwest and I called them today to find out if they would either give/assist her with her epipen should an allergy issue arise and they said that they can't. I can't find an airline that will offer any kind of assistance. I'm sure it's due to liability, but imagine what could have happened had I not asked?! She just turned 8 and with her learning disabilities, etc, there is no way that I could rely on her to give herself that injection. Heck, I can't even get her to take her inhaler for cough variant asthma herself, and that isn't life threatening! Her dad may hate to pay for both of us to fly, but until she gets to an age where she can be relied upon to know what to do I won't be ok with her flying alone.



I know West Jet airlines are taking measures to carry 2 Epipen on board to inject someone who is having an allergic reaction. You can look into it. I don't know if this helps.


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## mom2brooke76

Alexsandra said:


> I know West Jet airlines are taking measures to carry 2 Epipen on board to inject someone who is having an allergic reaction. You can look into it. I don't know if this helps.





I looked into them, but from what I can tell they only fly from Orlando to Canada   It doesn't look like they fly within the US. Hopefully I'm wrong about that though!


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## crashbb

mom2brooke76 said:


> I looked into them, but from what I can tell they only fly from Orlando to Canada   It doesn't look like they fly within the US. Hopefully I'm wrong about that though!



It's a Canadian airline.  All of their flights either originate or terminate in Canada.


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## Alexsandra

mom2brooke76 said:


> I looked into them, but from what I can tell they only fly from Orlando to Canada   It doesn't look like they fly within the US. Hopefully I'm wrong about that though!



Sorry about that, it is a Canadian airline. Here is what I found on USA carriers that might help.

http://foodallergies.about.com/od/outandabout/a/Airline-Food-Allergy-Policies.htm

If I were you I would not send my allergic child alone on a plane. Even if the airline can inject the epinephrine needle, I would not leave that kind of responsibility to a stranger. But that is just me! I would feel too guilty if something happened and I wasn't there to protect him/her.
I know plane tickets do not come cheap and it can quickly burn a whole in your pocket but better that than to loose a child.


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## disfan07

I am older (23) which makes my situation even more rare but I was also just diagnosed with a sunflower allergy but it is much more mild (along with being diagnosed with a wheat, oat, and sesame allergy). My sunflower allergy is mild to the point where I don't need to avoid sunflower oil. (for many people, even with peanut allergies, oils are okay because the proteins are not "supposed to be" present anymore because of the heat)

In addition, I am also allergic to peanuts, eggs, shellfish, coconut, tree nuts, sesame, wheat, oats, brocolli.

I have anaphylaxed to peanuts, eggs, shellfish and hazelnuts. We think Oats and/or wheat caused a borderline anaphylaxis reaction (we are not sure which is why I am going for a wheat oral challenge next week).

As a previous poster said, allergies can worsen very very quickly. I ate shellfish one week with no noticable problems adn the next time I ate it, I went into anaphylaxis. In addition, if oats and/or wheat caused my severe reaction 4 weeks ago, it was the same thing. I ate a bagel and oatmeal the day before and nothing. The next day, severe reaction (I ate things with both oats and wheat...things I had always eaten). But even with my more mild allergies, I am more prone to severe reactions because I have severe asthma and eczema and I also have an IgE of 3000 which all makes me more sesceptible to unexplained anaphylaxis.

It's hard. I'm not going to lie. Except for peanuts, all my allergies have developed over the past 5 years. At 23, I still have days where I get mad because I can't go get something from burger king that I used to eat, or that I can't have eggs (even though its been 4 1/2 years), etc. There is so much I cannot eat anymore that I used to be able to eat. The thing is, since she is still young, there is a chance that she might grow out of it. That happens a lot with children and food allergies (even peanut allergies). 

I just make sure to read everything. I do eat out, but I know its a risk. I try to eat at restaurants where they have ingredient lists (around here thats BJs, Islands, Red Robin, Chipotle, etc). That way I can see the ingredients. But still, theres always a chance. But personally, for me, its a risk I take because I'm not willing to live in a bubble. Now don't get me wrong, I don't take allergies lightly at all (just ask my camp directors adn fellow counselors....I take the childrens allergies there very very seriously) but you learn that there is a fine line between being cautious and letting the allergies control your life. It takes a while to learn how to deal with it but IME, eventually, you do figure it out.

I shop at between 2 and 4 grocery stores per week depending on what I need (Whole Foods, Sprouts, Ralphs and Target). I usually spend half my day grocery shopping and the other half cooking for the week. Its hard. Its time consuming, but it's life and it does become routine.

For snacks without sunflower oil, I have only found a few. If she can have peanut oil though, there are others (there are many kettle chips that are made in peanut oil). But Fritos use corn oil. Also, there is a company called good health natural foods that has avocado oil chips (really good) and some other chips/snacks that do not use sunflower oil. I am more limited because I cant have wheat so there are probably some others that would be okay as well, I just havent looked.

Hope that helps a little bit. Its a tough allergy to deal with. And allergies in general are very difficult. In my opinion, I think food allergies are one of the most difficult and one of the scariest things to deal with.


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## 1988Polar

Hi, I honestly do not find this allergy unusual at all.  I have been allergic to Sun Flower since 1989.  I spoke with a specialist at the time and he said it was unusual and generally speaking, Sun Flower is part of the Rag Weed family. Thus anyone allergic to one will or should be allergic to the other.  

I have been watching what I eat for YEARS.  Reading labels is a must!  It seems like anything and everything has the potential to have Sun Flower oil. Eating out is hard too... keeping in mind what you see at the stores when reading labels, makes me think of what not to eat when I am out. But that is not always key, so I do carry Benedryl AND Claratin Redi tabs.  

Things to note that you might also notice reaction too:  Cantalope, Bananas, and  Kiwi there are others too.  I cannot think of off hand.  

Personally if I eat Kiwi, Cantalope or Bananas I just get a slight itch in my throat.  NOTHING like if I was to eat something with sun flower.  I was told to also avoid Flowers from the Crysanthimum family. 

Hopefully things have evened out for you.


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## MyTigers

mom2brooke76 said:


> 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!




My husband got diagnosed 5 years ago with sunflower allergies the hard way. He is allergic to all forms including the vapors from the e-cigarettes.  We were glad the bowling alley we frequent banned smoking.  However, now they are all using the e-cigarettes and we have found that sunflower oil is an ingredient in some of the flavors.  Unfortunately, they won't ban that in the alley so when there is a high use of them, my husband has to take a couple of benadryl just to get through his bowling league.   Just wanted to give you a heads up  on that in case someone vapes in the vicinity of her that her reaction might be from the vapors.


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## mom2brooke76

Thanks everyone! It's hard to believe this post was from 2012! We've discovered that it's the seeds that she's allergic too, so basically anything with sunflower seeds (including sun butter) causes a reaction. Fortunately it's only been hives, but she tested so strongly against it that she carries an Epipen too. We have learned that sunflower oil doesn't seem to be an issue as it is very refined (this seems to be the case with lots of people according to the doctor). I still read labels and know what is safe when we eat out. We do lots of Disney cruises and they're FANTASTIC about taking care of her, even making her own basket of bread


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## Starwind

The FARE website is an excellent resource for food allergy information -- everything from guides for the newly diagnosed to info about food allergies in schools, etc:  https://www.foodallergy.org/

Their resources page for the newly diagnosed:  https://www.foodallergy.org/resources/newly-diagnosed


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## JJ_Ohio

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.


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## 1988Polar

mom2brooke76 said:


> 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!








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.


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## mom2brooke76

JJ_Ohio said:


> 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


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## mom2brooke76

1988Polar said:


> 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.


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## 1988Polar

MSSANDRA said:


> 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


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## Random Ninja

1988Polar said:


> 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.


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## 1988Polar

Random Ninja said:


> 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.


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## Random Ninja

1988Polar said:


> 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.


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## 1988Polar

Random Ninja said:


> 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.


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## nicoled315

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.


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## cmwade77

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.


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## Starwind

1988Polar said:


> 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


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## Starwind

mom2brooke76 said:


> 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


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## Jessica Kuhlman

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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