Introduce Yourself - We're Glad You Found Us!

[Peg]

Wow. Interesting. Paul doesn't have an allergist any longer. Just a PMD who happens to be a pulmonary MD as well. I sent him a link. He's going to check it out. After so many years of trusting his epi pens I'm not certain he will switch over but it's a thought.
Thanks.

[PurpleCat]

Hello!   

[Peg]

Hello. So many familiar names.

He does not like the look of the new epinephrine. He wears t shirts to work. No shirt pocket. He's so accustomed to his epi pens they're a comfort measure having them there on his hip. He's a creature of habit.

[Peg]

Thank you all for being so welcoming and as friendly as I remember you all. Thanks Becca for reminding me you folks exist.

[Cheyenne]

Hi there,

I have recently noticed that every time I consume beef I become very sick. Within an hour I will be vomiting, etc. I have gone days and days without eating red meat and notice I feel great but as soon as I eat it...blagh. Does anyone else suffer with this?

[rebekahc]

Any chance you were bitten by a tick?  There's a red meat allergy that can be caused by tick bites. http://www.webmd.com/allergies/news/20140813/tick-bites-red-meat-allergy

[GoingNuts]

Welcome Cheyenne!

I was going to ask the same question as Rebekahc - it's worth looking into.

I hope you can get some answers quickly - feeling sick like that is no fun. 

[Macabre]

Cheyenne--Welcome!  Here are some threads to look at. 

Galactose-Alpha Allergy anyone else?

I'm linking threads.  I don't see that we have a thread that is only about this allergy but do have content in various threads.  I might quote some of it into this one, so this can be a helpful one-stop shop for dealing with this allergy.

Re: Introduce Yourself - We're Glad You Found Us!
Re: Introduce Yourself - We're Glad You Found Us!
Re: Introduce Yourself - We're Glad You Found Us!


Side Effects of Anaphylaxis

Re: Anything I eat my throat starts swelling
Re: Anything I eat my throat starts swelling

Re: 2013 APCAACI conference

Re: From the AAAAI meeting

Re: Living with Food Allergies, FEB 2013

[healinghacker]

Hi
My name is Denise - I run a site called healinghacker.com.  The site started as a personal blog detailing our quest for a cure to food allergies and asthma.  We continue our quest trying everything from Chinese herbs to probiotics and supplements. 
I also interview scientists, doctors, authors, and fellow journey members.
I did an interview with Dr Li (originator of FAHF-2).  You can read it here:  http://www.healinghacker.com/chinese-herbs-asthma-food-allergies-qa-with-dr-xiu-min-li/     talking about her work using herbs to prevent anaphylaxis and generate tolerance. 
I also just finished interviewing Moises Velasquez-Manoff, author of "An Epidemic of Absence" and am working to post that this week.

My goal is to share what we are learning with others with the hope that we can help our kids and their kids overcome the immune miseducation that is food allergies, asthma, and eczema.

Thanks
Denise
www.healinghacker.com

[Donna Michele]

Hi, I'm new here, suffering a new allergy in an allergy family I have a tough time with. Allergic to latex, bananas, walnuts, scallops, muscles, clams, oysters, grains?, night shades, and cucumber, honeydew, cantaloupe... I've been juice fasting and doing really well.... until I juiced watermelon! Just a bit of mild OAS  last night... didn't really even think about it... fast forward to second juice, which I had at dinner time today... within an hour my face, neck and chest are coming out with hives.    Really bummed.

[rebekahc]

Hi Donna and welcome!  Sorry you developed a new allergy - that's always tough.

[Greybeebeluga]

Hello! My son had two severe reactions and after bloodwork the diagnosis is an allergy to coconut. Coconut is in so many products that I was shocked. We have found one bar of hand soap, one line of shampoo/conditioner, and I make our laundry detergent. Is anyone else in this boat?

[rebekahc]

I'm so sorry to hear your son had reactions!  Coconut is really hard to avoid - I'd think even more so being vegan.  I know my sister uses a lot of coconut flour and coconut oil in her vegan recipes (especially baking).

Coconut is not a common allergen, but the good news is that a few years ago the FDA decided coconut is a tree nut (even though botanically and even allergy-wise it's not).  Anyway, that should at least make your life a little easier since tree nuts (and now coconut, too) have to be clearly labelled on food ingredient lists.

I'm not sure how cross-reactive coconut is with other foods in that family (like dates).  Did the allergist give you any indication whether you need to avoid those with your DS?

If I remember correctly, we used to have a member here with a coconut allergy, but I'm not sure she's still around.  Hopefully someone else will chime in who has more knowledge than I do about it.

Welcome! 

[spacecanada]

Welcome!

Use a heads up that Canada does not consider coconut a priority allergen and it will not be identified on labels here.

As a vegan family, we just found a priority allergen-free ice cream made of coconut (it isn't a nut here), and we occasionally buy desiccated coconut for baking, but otherwise don't have any coconut products or anything containing coconut in our house. It is doable, though it takes some work.  As with any allergy, you will likely have to make most things from scratch and eliminate most, if not all, processed food items.  You will also have to get used to calling manufacturers to see if items are made on shared lines, because they don't have to declare those 'may contains' - it is voluntary.

As for detergents and soaps, have you checked with Nature Clean and Seventh Generation about their ingredients? They use sweet almond oil in some items (not the ones we buy), but I don't see coconut on any of the ones in our house. Again, could be because they don't have to label for it here.  Or because beauty products and household cleaners don't have to follow allergen labelling. Worth looking in to.

[PurpleCat]

My DD had a coconut allergy she outgrew and past a challenge in February 2015.  She originally tested positive for the allergy and a couple years later had a reaction to accidental coconut ingestion.

When I first started, we stuck to Kiss My Face olive oil based products and soaps made from goats milk.  (we also had to avoid Shea Nut which limited us as well)

I am not a doctor.  I am a mom with a child who was allergic to coconut and this is what worked for us.

There are more soaps out there that you can use if your kiddo is not allergic to man made coconut products.  Way back when I started researching coconut I called a company, might have been Johnson and Johnson, and somehow got lucky enough to speak with a chemist!  Super fantastic guy who spent so much time on the phone with me talking about coconut.

There are different man made coconut products and how much coconut protein then have in them depends on the formulas and raw products they manufacturer uses.

His advice that I followed was:

Avoid:  Cocamide DEA, or cocamide diethanolamine and Cocamide Mea, or cocamide monoethanolamine

Patch test first - and or discuss with your allergist:   try using products containing Cocamidopropyl betaine as this product is so processed that there is little or no coconut protein left.

My daughter had no issues using products that contained Cocamidopropyl Betaine and it opened a world or products for her as she got older and it began to matter to her what shampoos and soaps she was using.  She did not like the smell of the Kiss My Face soaps.

It is appropriate that coconuts be considered a tree nut because other tree nuts are in the same botanical family.  Coconut is a drupe.  If you do a Google search you will find may sites that explain the difference between a true tree nut and a drupe.   My favorite site for this is:  http://waynesword.palomar.edu/ecoph8.htm.  There are very few actual tree nuts.  You will find "nuts" like almonds, pecans, and macadamia nuts to actually be drupes like coconut.

It was a huge help to us when the FDA added coconut to the Tree Nut category for food allergen disclosure.

Feel free to pm me if you have questions I can help answer.