Newly Dx-Sesame, Sunflower, Flax, Wheat, Eggs

[lakeswimr]

Well, I recommend you read things printed by actual allergy organizations as well.  There is a section here that has various links and I recommend you check it out and consider buying some books on food allergies.  The trouble for people like you is that the food allergy field has changed a lot as far as how much doctors now know and what they recommend.  There are people who are adults with food allergies who are not properly diagnosed or even if they are, who were not given proper information that is very important to staying alive!  (Such as written emergency action plans.) 

Do you just have the one epi pen or several?  You should always have at least 2 with you.

I have asthma and when I was a kid and teen the advice I was given was different than what is given out now.  It still affects how I think of asthma. 

Also, unfortunately not all allergists (never mind most doctors) know the latest recommendations for food allergies so it isn't that surprising that you could have gone this long undiagnosed. 

I recommend you print out that emergency plan and have it in a med kit with your epi pens with you at all times and if you are out with others, tell someone about your epi pens. when people have reactions they sometimes have very poor judgement about whether or not to epi.

[Shasta0708]

Again...great advice. I do have 2 epi-pens but always keep one in the night stand and one in my purse. I should carry 2 in my purse at all times? I keep benadryl with me also. Should I be using a special container to keep it at the right temperature. I have just had it thrown in my purse. I wonder if I should ask for some type of inhaler??? Accidental exposure to Sunflower and Sesame bring on the wheezing and feeling like I cant catch my breath big time(obviously other symptoms too) Would that be something to help? Would I use it before or after the epi or in lieu of??? I hate to sound stupid but I would rather ask now and know.  I'm going to check at my library tomorrow to see if I can find any books and then order the book previously recommended. I go back in August to my allergist so I would like to have a list of things to ask him.
The emergency action plan is getting printed now. I look forward to the day that I can find a base level of foods I do well with and then add on from there. The sesame thing is hard enough but the sunflower and oil, ..oh my goodness....(flax doesn't get much time or attention right now) Its hard to get past the first two...lol f there is one there is probably all...and then there is wheat and egg...
Thank you (again) 

[LinksEtc]

I do have 2 epi-pens but always keep one in the night stand and one in my purse. I should carry 2 in my purse at all times? I keep benadryl with me also. Should I be using a special container to keep it at the right temperature. I have just had it thrown in my purse.

I was told by an allergist that we should always keep 2 at home, and 2 with us when we go out.  Sometimes, a second dose of epinephrine is needed for a reaction ... you'll see those instructions in the "monitoring" section of the "Food Allergy Action Plan" that Lakeswimr gave you the link to.  Epi's should be kept at a certain temperature range ... we often use an insulated bag, but depending on the weather, sometimes I put them in my purse ... people have different ways they handle this issue.

I wonder if I should ask for some type of inhaler??? Accidental exposure to Sunflower and Sesame bring on the wheezing and feeling like I cant catch my breath big time(obviously other symptoms too) Would that be something to help? Would I use it before or after the epi or in lieu of??? I hate to sound stupid but I would rather ask now and know.

These are really important questions, lots of people newly diagnosed get confused with this.

Again, look at the "Food Allergy Action Plan" ... For lung symptoms like wheezing after a suspected allergen ingestion, epinephrine should be used.  Inhalers/bronchodilators and antihistamines should NOT be depended upon to treat a severe allergic reaction!   

If you do have asthma, then ask your doctor for an "asthma action plan" and medicines.  After epinephrine is given for a severe allergic reaction, then after that, inhalers may also be used if your doctor agrees.

I'd suggest discussing the plans with your doctor(s) and get signed actions plans from them.  This should probably be done ASAP, maybe give the office a call.

Here is an article that I'd recommend reading:
http://www.aanma.org/pdf/AnaphylaxisGuide.pdf
"When Anaphylaxis Looks Like Asthma"  Pages 11 - 13

Inhalers won’t stop anaphylaxis, but epinephrine will
stop either an asthma attack or anaphylaxis. So if in doubt,
use epinephrine and cover your bases.

You're the second person recently who posted that their allergist didn't give them an action plan.  It always worries me when an allergist doesn't give a patient such a plan. 

[Shasta0708]

Thank you and yes, I'm a little (more than) bothered that I was not given more info and I think because I already had an epi prescriped by my old doctor, that maybe he incorrectly assumed that this was covered already??? but, NO. The only thing he asked was if my Epi's are up to date. By all the things I have read the last few days I'm pretty freaked out. It's a lot of info to take in over the last few days I have been reading so much. I've printed my action plan and Hubby and I have already talked and we are going to go over it tomorrow night. Feeling scared and over-whelmed but I know I keep reading all over this site that things will get better but right now it doesn't feel that way.
Thank you to every one for the welcoming and great advice. 

[sbs]

Feeling scared and over-whelmed but I know I keep reading all over this site that things will get better but right now it doesn't feel that way.
Thank you to every one for the welcoming and great advice.

It can be stressful in the beginning learning what you need to know about food allergies and making some lifestyle changes.  Reading on this site is great, but don't send yourself into information overload - focus on the important things like finding safe food choices, recognizing the symptoms of a reaction, and knowing how to treat the reaction.  Take things one step at a time.  Don't be afraid to ask questions and remember that you aren't alone.

Most people find that it really does get a lot easier to manage food allergies once you get through this initial phase.

 

[CMdeux]

Yes, while it sounds flippant, it isn't...

remember, you've lived this long WITHOUT knowing... so having the information should make you feel better about your management.  Information is power!!

[twinturbo]

You might give Cravings Place mixes a try. Email the owner she's both responsive and knowledgeable about her ingredient suppliers. They are not glycemic index friendly as they're all brown rice based, but if you can handle that for treat baking it works. I use unsweetened versions of the mix and use plain sweet potato puree to help binding. The mixes all have xanthan gum... I don't know if that's something you can have but it's going to be hard (but not impossible) to bind anything without gluten, flax or xanthan gum.

Ironically, I can help you with a lot of Asian style dumpling and buns that don't use wheat, eggs, or seeds but for direct "bread" replacements I don't bother. For pasta I use Ancient Harvest corn-quinoa, and just a lot of their quinoa in general. It's a psuedograin unrelated to true grains, nutritious, easy to prep, versatile and kinder on glycemic index though ultimately still a carb.

[Shasta0708]

Yes, while it sounds flippant, it isn't...

remember, you've lived this long WITHOUT knowing... so having the information should make you feel better about your management.  Information is power!!

It doesn't sound flippant....you are very right! It's just been a lot to process. As of this past weekend I had to give up peanuts. I originally tested negative to peanut allergy but have started reacting with some mild facial swelling, rashes and many other symptoms. My allergist wants me to do a test (insurance doesn't cover) but he said it is a newer test that will test my reactions to the individual proteins to determine which ones I'm reacting to. He said that way we will know if it could advance to an ANA reaction or would just be something to avoid. After all the test I've had this year I can't really afford to do it but he definitely doesn't want me to eat them anymore boo...Hopefully I will be able to get the test done in August when I go back. It took until late Tuesday for the last of the puffiness in my face to go down (from Saturday) but my DH told me tonight that I was looking a lot better than I have been:) yay!! So YES information is power! Has anyone else here started reacting to other food after you tested negative? Is it something that surfaced more because I've gotten rid of the other allergens??  ( Does that question make sense). I thought the diagnosis was over....

[Shasta0708]

You might give Cravings Place mixes a try. Email the owner she's both responsive and knowledgeable about her ingredient suppliers. They are not glycemic index friendly as they're all brown rice based, but if you can handle that for treat baking it works. I use unsweetened versions of the mix and use plain sweet potato puree to help binding. The mixes all have xanthan gum... I don't know if that's something you can have but it's going to be hard (but not impossible) to bind anything without gluten, flax or xanthan gum.

Ironically, I can help you with a lot of Asian style dumpling and buns that don't use wheat, eggs, or seeds but for direct "bread" replacements I don't bother. For pasta I use Ancient Harvest corn-quinoa, and just a lot of their quinoa in general. It's a psuedograin unrelated to true grains, nutritious, easy to prep, versatile and kinder on glycemic index though ultimately still a carb.

Thank you, Thank you, Thank you! I'm going to contact them right away. I think the hardest thing,sadly, is trying to get companies to give information. I have had to do a lot of Emailing since I work during the day and can't phone these places and not too many (a few) companies want to give out sunflower information. It's soooo frustrating...I've been waiting just over a week to hear back from Quaker on their gluten free rice cakes and they were willing to say they were ses. free but said they couldn't share the sunflower info with me...really? But they want my continued business...lol...I really dont want to die for a plain ol' rice cake..KWIM??? Sometimes I just have to laugh at the absurdity...what else can you do?
I would luv to find out how you make the Asian Style Dumplings and buns?? yes please!!! any recipes or possible safe ingredients would luv to know about. I've been using the Tinkyada noodles but I will have to give the Ancient Harvest a try. and yes I can use Xanthan gum. Thank You.

[twinturbo]

For dumplings and buns, a typical binding combo that doesn't use wheat or wheat starch is tapioca-rice-potato flours or starches. This lady figures it out with millet, sorghum and quinoa as well if I remember correct. Double check all she writes up and also your sources for the alternative grains. Quite frankly the biggest challenge I've found thus far is alternative grain flour like quinoa, sorghum, and millet (and sweet potato flour, water chesnut) that are free of nut and wheat/gluten contamination. I also have to worry about milk but that's not your problem.

Gluten-Free Pot Stickers: Recipe Trial 3

Don't get hung up on it's called Viet Kitchen. It doesn't mean these are necessarily Vietnamese only. I'll post more when I can.

I remembered something worth mentioning: "glutinous" rice. It has nothing to do with glutens or wheat, etc., mentally replace "glutinous" with "sticky" when it comes to this rice. Hence, sticky rice or sweet rice. There are two types of sticky rice, long and short grain. Koda Farms Blue Star mochiko is short grain sticky/sweet rice flour. That's the brand I would use.