Introduce Yourself - We're Glad You Found Us!

[RVALawGirl]

Hi! I'm new here. Not new to allergies but newly diagnosed (clinical diagnosis) with Latex-Fruit Syndrome. I'm amazed at how little there is about this online, and how little food in my house I can actually eat.

[twinturbo]

Wow, even prednisone? I know what you mean about nearly starving while surrounded by food. We're pretty limited ourselves between all family members. I have birch-apple, and probably the other birch-related items. Welcome nonetheless.

[RVALawGirl]

Thanks 'twinturbo'. Yeah, prednisone is actually my most severe allergy and most difficult to understand for my doctors. The last time it was prescribed to me (by a doctor who didn't read my chart for allergies) my heart almost stopped and I had to be rushed to the hospital. The food thing is really new though so I'm struggling. I just wish there was more information out there. I'm so scared to eat anything.

[twinturbo]

That makes me think not only do you need to know about avoidance but maybe get a note from your allergist for the ER in addition to your Emergency Action Plan. Do you have an epinephrine auto-injector and MedicAlert (or other) bracelet for your life threatening allergens? Because I can tell you if you're incapacitated you'll need that to speak for you regarding the prednisone.

What happened? I see that you have dairy listed as a lifelong allergen. Just so that we know more is that a life threatening IgE-mediated allergy and the latex and related cross-reactive fruits is the only new part? There's a few people here really experienced with latex so they'll definitely be able to help.

[RVALawGirl]

I actually went one step above a medic alert bracelet (which I do have) and I carry a special USB drive that has all of my allergies and sensitivities, as well as medical conditions and medications, all listed. It's saved my life in the ER more than once.

Dairy has always been something I can't handle, I guess more of a sensitivity than an allergy. It's the lactose enzyme that I can't handle. I've always been good (or so I thought) with coconut milk, but coconuts are on my new list of latex related things to avoid. Latex (medical gloves, band-aids, etc...) started creeping up when I was right around 25 (I'm 34 as of last month) and it's just recently that I've been having the reactions to the related foods.

[twinturbo]

OK, so for the sake of precision and accuracy I'm going to write this as a I understand it, we'll recursively edit until correct.

Your wheat and dairy issues are intolerances (digestive issues) but the medications, including prednisone, induce life threatening allergic reactions meaning you experience anaphylactic reactions (involving the immune system presenting as a constellation of symptoms). You do/do not have an epinephrine auto-injector (not clear) prescribed and always carried for allergic emergencies, and have already seen an allergist for an Emergency Action Plan. You have a medical ID bracelet, or other worn item clearly marked with your allergens. Latex allergy began around 25 but has now extended to cross-reactivity with foods related to latex.

What has happened in terms of symptoms that led you to the ER? I'm assuming an anphylactic reaction. This is just to confirm we're on the same page and also someone is likely to refer you to the anaphylaxis grading chart.

[RVALawGirl]

I'm still learning all the correct terminology. Most of what you said is correct. I do not have an epi-pen yet, I am getting one this week as well as a new kind of cream to combat the skin reaction I have to the latex and the latex-related foods. I also ALWAYS carry my asthma inhaler which has thankfully been enough up to this point.

The ER trip because of the prednisone is difficult to explain. I was prescribed the prednisone by an orthopedists for a cyst and related swelling in my hand. She didn't read my chart and I didn't recognize the name of the medication. Since it had been 10+ years since I had any reaction to prednisone and had moved 6 or 7 times and was using a new pharmacy, no one picked up that I shouldn't take it. It was a 5 day course, decreasing dose by dose over the 5 days. On day 2 I was in the kitchen and when I stood up from the breakfast table I immediately fainted. My dad in a retired EMT and he could barely find a pulse, called the ambulance. The doctor said that the prednisone caused my already low blood pressure to dangerously drop when I stood up which caused me to faint. The prednisone was causing my heart rate to slow dangerously. I was kept in the hospital on fluids and closely monitored for 72 hours so they could make sure that all the prednisone was out of my system. I went through the full gamut of cardiac testing to make sure there was no permanent damage and have been ok since. I don't know if that's an anaphylaxis reaction (I always assumed that was the whole throat closing, can't breathe type of thing).

[CMdeux]

RVALG--  you will want to make sure that everything on this chart is familiar to you--

Anaphylaxis Grading Chart

My daughter has had some reactions like that.  No real breathing difficulty to speak of, just the cardiovascular symptoms.  Scary, scary,. scary stuff, since nobody around her really recognizes what is happening until you're nearly in cardiac arrest.

  Technically, that was probably an "anaphylactoid" reaction since it very likely isn't IgE-mediated (prednisone isn't a protein), but that doesn't matter all that much in terms of first aid or avoidance since epinephrine is the first-line treatment for exposure either way.

Don't rely on anything topical for treating symptoms with a Type I latex allergy-- if you've got cross-reactivity with foods, it's almost certainly a type I allergy.    Honestly, if you have that kind of allergy, even skin contact is a bad, bad idea over time.

[RVALawGirl]

Wow! I had no idea all of that fell under the umbrella of anaphylaxis. My reactions are usually grade 3 and above so I'll definitely be getting that epi-pen soon. The confusion is that I don't just have one doctor treating my symptoms because no one understood what was going on. A little over a year ago I woke up at a friends house covered in hives, my regular doc thought exposure to laundry soap or something similar that I'm not use to (I've always had sensitive skin) but referred me to an allergist for some testing. He did some random skin testing and I only reacted to soy, corn, and carrots - none of which I had eaten in a time frame to produce the hives I had. I've avoided those three things thinking that was all I needed to do. My PCP treats my asthma because we always assumed that it was triggered at the change of seasons (pollen, trees, etc...) but it was never something I was actually tested for. I definitely need to find a new allergist for sure. It was my neurologist that actually brought the latex-fruit connection to my attention and strongly urged me to follow up because of the neurological concerns (headaches, dizziness, confusion) - I have drug-induced essential tremors that she helps me with. Adding another doctor to the list shouldn't be too difficult.

[twinturbo]

One thought, I don't know if I'm reading too much into your screen name but if it means something like, "Hi, I'm a 2L" and your allergic reactions are now anaphylactic you'll probably want to investigate a 504 designation through your school's student services office. You must self-identify in post secondary schools to initiate the process.

On the chance it refers to LE then I'm thinking retool the thought process of what you'll have to handle physically and maybe develop some protocols on how you'll avoid latex on the job. First thing that comes to mind is searches/gloves. I think Turtleskin doesn't have latex in them stock but I don't know about grips and you'd want your own stash of nitrile at a minimum.

[Beth]

Hi, I am very new at this kind of stuff so here goes.  I have soy, corn and milk issues that I know of.  I started with these issues about 3 years ago practically overnight.  One day I was eating anything the next I was reacting. It started after a bad reaction to an arthritis medicine that my doctor prescribed.

When I eat anything with corn and soy I have one of two maybe 3 reactions.  My tongue get sore pretty immediate an I think sometimes swells, I start itching all over and I get rashes or quarter size red itchy sores or burning.  Also I have problems with blood pressure dropping, feeing and having blood sugar drop to like 65 (usually 2 hours after eating).  Very frustrated.

I went to my doc early on and he did a blood allergy test and said it came back that I was not allergic, including penicillin which I have been allergic to since childhood.  He just looked at me like I was crazy, shrugged his shoulders and sent me on my way.

I would like to find vitamins that I can take but need something corn and soy free and non gmo. 

I am confused because sometimes I can eat things (like chicken or beef) without a problem other times major reaction.

Any ideas would be greatly appreciated.

[CMdeux]

He just looked at me like I was crazy, shrugged his shoulders and sent me on my way.

Oh boy.

Find a new doctor.  One who will take more time to understand what the heck is going on.

These arent' panic attacks, this isn't in your head-- you have BP readings, yes? 

If you can SOMETIMES eat things that are allergens, and sometimes not, though... then they probably aren't truly allergens, or something weird like exercise-induced IgE-mediated things are going on.

But if you truly have a disorder that is leading to idiopathic[/i] anaphylaxis or something-- you should NOT be without epinephrine.  Wow.  I'm really worried that your doctor just dismissed you so cavalierly. 

[April]

Hello, my Name is April.  I have a severe shellfish allergy.  I have always had some sort of small reaction to it as long as I can remember, but last week, on a vacation, my food was fried directly with shellfish and 20 minutes later was the most terrifying moment I've ever had in my life, well up to that point.  I was in the Bahamas, so I was also in a panic not knowing what kind of medical care to expect. though it was clean and they did exactly what they were supposed to do.  I returned home and followed up with my doctor immediately to get an epi pen.  but I didn't much more info on it, except to stay away from places that serve it. duah. a week later I was in a health food store trying to find a calcium supplement for my daughter and noticed my mouth burning, I left the store, and as I was driving I felt the heart pounding, throat closing coming on. pulled over and gave myself the epi then drove to the hospital.  they kept me for about 45 min and then let me go. Sunday, out of no where, it hit again, and on top of the reaction, I started to panic. so now im refusing to go to work or to anywhere alone, I wont touch anything without gloves. I'm fighting panic attacks off, in fear of coming into contact with something where "shellfish hides". I had to throw out my dog food and treats. im waiting to get in to see an allergy specialist so I can get back to living. these reactions have been so terrifying, idk how long it will take me to get back to myself again.

[SilverLining]

Hi April.  I know how bad those panic attacks can be.  I went through them for a long time.

If you scroll down the main page, there is a section for fish/shellfish allergies.  One if the topics "stickied" at the top is about hidden sources.  I copied the information from our previous on-line home for you.

There are other discussions in that area you may find helpful.  Also, an area for adults with good allergies! and another for restaurants.

Lots of info available.  But if you don't find what you are looking for ask.

[rebekahc]

Welcome April!  Sorry to hear you're having reactions and panic attacks - and I know it can be difficult to tell which is which sometimes.    SL has pointed you in some good directions.  I'd also suggest reading the recent threads by a new member jenavy21 because a lot of the advice she got could also apply to you.  It seems pretty common (especially with adult-onset allergies) to react all the time (or seemingly to random things/everything) right after a big reaction.