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Wednesday, February 26, 2014

I'm an Alpha Gal now!

I promise all my posts will not be this long - but wanted to give you the background of the story - hopefully it will save someone's life!

Who knew?  Because of a small tick bite I received 6 months ago I was  diagnosed with a new, life-threatening allergy called "Alpha-Gal".  I want to share my story and make people aware of this rare but growing allergy due to our increasing deer population, which spread the ticks. Alpha-Gal has only been discovered in the last few years and more people are being diagnosed as doctors learn more.  My allergist told me last week that he has been diagnosing about 1 person per week.

Here's my story:  My husband and I were in Falls Creek Falls, TN on a weekend trip at the end of July; we grilled steaks at our cabin for dinner, sat outside and watched the sun set.  Nothing out of the ordinary.  Around midnight I woke up itching, tossed and turned for a while, and never could get back to sleep.  Then at 2:30 a.m. my hands felt like they were on fire and itching like I had never experienced before.  My first thought was something bit me and I was reacting.  I got up and drank 2 bottles of water to try to flush whatever it was out of my system.  I sat down and within seconds I became very light headed and dizzy, my lips and tongue started to swell.  I told my husband that something was very wrong.  He got out of bed and turned on the lights and from the look on his face I knew I was in trouble. (My husband, Kirk, told me later that my face was swollen like a giant red balloon and my lips look like bright red, painted clown lips -ugh- glad no one took any pictures).
We were in the mountains in Falls Creek and the cell service is very limited in the area and we had none at the cabin.  We got in the car and had to drive about 5 miles to get phone service.  My husband called 911 because we did not know where the nearest hospital was or where to go for help.  During this time I preceded to get worse – my whole body turned bright red and was covered with hives.  We were both very scared.  911 told us not to move – they were sending help to us.  The first responders were 2 volunteers from the Spencer, TN Fire Department.  They took one look at me and immediately gave me epinephrine (EpiPen).  The ambulance arrived within 5 minutes and they quickly put an IV in my arm and pumped me full of Benadryl and Steroids. I was told I was having an anaphylactic attack – such as those who are allergic to peanuts, etc.
The ambulance took me to a hospital in the small town of Sparta, TN.  The doctor and nurses were fabulous – and explained this reaction was most likely environmental, meaning I was bit by an insect or it could even be from the detergent the sheets were washed in… seemed plausible.  I was released with prescriptions for more steroids and an EpiPen.

After returning home to Nashville I did not improve – I was still having minor reactions and 3 days later, after eating pork, I had a friend try to drive me to the ER at Vanderbilt - but while on the phone with the doctor he said I needed to administer the EpiPen immediately based on my reaction.  My friend pulled over to the side of the road and she reached across the console of her car and zapped me in the leg with my EpiPen (she had a heck of a jab - I could not walk for a week - but thank goodness for her).  We called 911 and they met us with an ambulance because we were afraid the epinephrine would wear off (it only lasts about 30 minutes) before we made it to the hospital.  I found myself once again on my way to the ER via ambulance, this time to Vanderbilt University Hospital in Nashville.  I was seen by an allergist and I mentioned I received a tick bite in June while working in my yard (this was 6 weeks earlier) – which at the time I did not think was relevant – but I was trying to give the doctor as much information as I could so we could figure this out.  He guessed it immediately – even before the blood work was back.

I had Alpha-Gal – which is short for Galactose-alpha-1,3-galactose. It causes a delayed allergic reaction to mammal’s meat and is affecting a growing number of people. This allergy is initially caused by a tick bite, not just any tick, but the “Lone Star” tick, whose numbers are increasing throughout the Southeast and up the East coast.  It is the only allergic (anaphylaxis) reaction that is delayed by 4 to 8 hours after eating one of the triggers, which for me was steak and cheese.  So I am now allergic to all mammalian meats and their milks, so no more lattes or juicy burgers for me.

Because the reaction is delayed by several hours, the proper diagnosis is often missed or misdiagnosed, which happened to me on my first trip to the ER.  With the affliction to the Alpha-Gal allergy I have to be constantly vigilant about the foods I consume and avoid all triggers 100% of the time because eating the wrong food could kill me.  Alpha-Gal can strike several weeks, as in my case, after the tick bite. 

So what does life look like after being diagnosed with this new allergy?  As long as I stay away from the beef, pork, lamb, etc. and dairy products I will be fine – eating out, which is one of our favorite things to do, has been a  challenge.  Cross contamination is a problem, my food cannot be grilled on the same grill as beef or pork or I will react.  So what can I eat…anything that flies, swims, or comes out of the ground.  I will surely get some strange looks when I say I am a vegan who eats fish and chicken.  Will this go away?  The doctor said the meat allergy will not – but there is a possibility I could try dairy again. If you should get a tick bite and the location itches badly, even weeks after the bite, this is an indication you could have the antibody which causes Alpha-Gal.  Testing for this allergy involves a simple blood test and could save your life.  

Along the way I have lost 15 pounds and I am leaner than I have ever been.  For the rest of the posts I will be leading you on a journey of food as seen through the eyes of my new allergy.  You don't have to have Alpha-Gal to eat like me.  Follow me and you too can get lean and healthier than ever.