General Guidelines - What works for me ... and what to avoid

Here's some suggestions on what to avoid and what is okay:

No meats that come from mammals (and yes, that includes Whale, Porpoise, Monkey and Bat if you are so inclined).  I thought it was a good idea to ask my allergist in case I ever decide to go on Naked and Afraid.

Obviously - Chicken, Turkey, Fish (including shellfish) are all okay to eat

If you can find it and are willing to pay an arm and a leg - you can also eat Ostrich and Emu.

Eggs are fine to eat

Pay close attention to turkey or chicken sausage products - sometimes they are in a pork casing or collagen casing.  Collagen Casing comes from Beef - I spent 30 minutes on the phone with Butterball to figure that out.

Do not eat anything that has been on the same grill as red meat - including grilled vegetables.

I found that out the hard way and that is my most common ongoing challenge.  Had a reaction to a Panera salad that had some grilled veggies.

At home, we have 2 grills - 1 grill for everyone else, 1 grill for me.  If we grill veggies for everyone, then we do it on my grill.

I have heard recommendations to not stand around a grill that is (or has been) cooking mammalian meat.  

One man reported that his wife has a reaction from just being around a smoky grill.

Anything Mayonaise based is fine since it is made from eggs and oil - I am usually okay with Aoili sauces

Mustard, Ketchup and BBQ sauces are fine

Margarine is fine - I use Country Crock in both stick and tub forms.

Be careful about Buffalo Sauce - some have butter in them at restaurants.  Franks Hot Sauce is okay.

Balsamic Dressings (even if they look creamy) are usually fine - because they are oil based, not milk based - but always good to ask

Watch out for Italian Dressings that have Parmesan and Romano Cheese in them

Avoid Ranch & Blue Cheese Dressing - due to fat based milk or buttermilk

Regarding milk products in general for reading labels - milk protein (whey) seems to be fine - so I am okay with pancake mixes that have powered milk in them or Nacho Cheese Doritos for example.  Cannot do the Ranch Doritos due to milk fat content.

For the first 6 months I avoided all dairy

Now I have been able to eat Non-Fat & Low Fat Dairy - 2 years after onset.

A friend of mine has been completely fine with dairy - everyone is different.

Vegan Cheese is terrible - but I did find a Vegan Parmesan Cheese at Whole Foods that I like the taste of.  Trader Joe's carries a good shredded cheese blend that is primarily soy.

Look out for gelatin - which is a beef by-product - so no Jello and no Gummie Bears.  Check the labels of candies for gelatin.  Gelatin capsules for medicines and certain immunizations are also a problem.

Also - I have found I am sensitive to lanolin - which is a by-product from sheep shearing.  Had an issue with Burt's Bees lip balm & Chapstick which was making my lips tingle and making me sneeze.  I now check all my toiletries and cosmetics for lanolin products and avoid them.  The Body Shop is a good resource for toiletries that are "animal free".  Also Whole Foods carries toiletries that are labeled "V" for Vegan.

Sharing Stories - Kathleen

I have had this allergy since 1974. 

Have been called a liar, drunk and hypochondriac by many doctors. I averaged 3-4 near fatal anaphylaxis attacks per year for about 20 years. 

An emergency room doc in  suggested avoiding the combination of exercise, full stomach, stress, wine, and exposure to dust. Since all my attacks occurred around holidays that kind of made sense. So for the next twenty years I took Benadryl around the holidays and never exercised with a full stomach. I also gave up red wine. 


I did find an allergist at that time who was determined to find out what was going on. He put me on allergy shots for dust, mold. I seemed to be doing better until this Thanksgiving. Had an episode at 6:00pm which never happened before. All previous attacks occurred between 12-2:00 AM. 


Called the allergist from 20 years ago and he was so excited to hear from me. "Get in here right away! I know what it is!!!"  He asked me what I had for lunch that day- a small piece of beef stroganoff and a salad. 


There it was! Blood work confirmed alpha gal. Lucky for me that I was never a fan of red meat anyway. Only ate it around the holidays! It may be that I was infected twice. Recovered for 20 years and then reinfected. 


I am a dog owner, outdoorsy person so ticks are always a problem and getting worse every season. 
Was so glad to get a diagnosis!  

Nearly dying 3-4 times a year and being chastised for it by the medical profession was not easy. 

I actually started having the anaphylaxis episodes in the mid 70's.  So it was over 40 years ago that it began. 

Ticks and chiggers were everywhere as we were building a lake cabin in the woods. We also had dogs. I remember being highly sensitive to chigger bites but also had lots of tick bites. 

Sharing Stories - Rob

I brought this on myself. Although I’m a foodie specializing in Memphis style BBQ pork (Well, I was.) I’d always wanted to stop eating meat. I’d tried vegetarianism a few times but never stuck with it. I loved my beef and pork.

I live on 10 wooded acres. I have a herd of semi-tame deer, and lots of wild critters including ticks. In 2012 I noticed a periodic itching rash that would break out, starting on my inner thighs, about once a week, sometimes more frequently, and last about two hours. It was minor, and more of a curiosity than a bother. I didn’t report it during my annual physicals, and didn’t worry about it at all.

In 2014 the rashes got worse, to the point where they would cover my upper legs, arms, back, and belly, and I began taking Benadryl at first notice, hoping to lessen the severity. That worked for a while, but required more and more tablets as time went on. When I was up to six tablets I realized there was a real problem, and I began recording my diet, suspecting I was allergic to something.

I noticed that the rashes would start 2-3 hours after eating a McDonald’s double quarter pounder with cheese. That was so weird I blew it off at first. I mentioned it to friends and everyone said I was crazy. Who’s allergic to McDonald’s?

So I tested the theory and sure enough, the results were repeatable. Every time I ate a McDonald’s double quarter pounder with cheese I’d get the rash 2-3 hours later. So I stopped eating quarter pounders. Stupid, I guess, I didn’t make the connection to the actual beef. The rash continued, though, but still it wasn’t bad enough to worry me. Benadryl worked, and I decided to just live with it.

On a beautiful April morning in 2015 I made a breakfast of scrambled eggs with Chinese black fungus, and an amazing piece of artisan pork belly from the farmer’s market. It was delicious! At noon I packed my little black Pomeranian, Pearl, into the car for a trip to town to buy groceries.

Four miles from home, stopped at a red light, on the phone with my girlfriend, my tongue suddenly started to swell, and my vision became tunneled. I realized I was not going to be able to remain conscious, and figured I had about three minutes to get somewhere safe. The light turned green.

I sped across the intersection and turned into a shopping center where my primary care physician had an office. I parked the car, locked it, and left the engine running and air conditioner on for Pearl, and I went into the office, at this point barely able to talk and about to pass out.

I said to the receptionist (as best I could), “I’m a patient here. Something’s wrong. I am going to pass out.”

They took me into an exam room, where I waited while they called an ambulance. I was able to give them the name of Pearl’s veterinarian who had an office just across the street. I handed them my car keys and asked them to board her there.

The next thing I remember I woke up in a pile of my own feces with two paramedics fussing over me. I’d passed out and seized. Wheeling to the ambulance I got sick and threw up in the parking lot. I passed out again.

The next hour was a haze of intermittent consciousness lying on an ambulance gurney in a hallway of the emergency department, apologizing for my stink to whomever approached. I wasn’t thinking strait, and I had no peripheral vision.

Interestingly, my hearing seemed perfect, but I didn’t like what I heard – the paramedics talking, “Wait, this can’t be right. Try the other arm.” You don’t want to hear that when you think you’re dying. I learned later that my blood pressure had crashed dangerously.

Finally in the ER, several people questioned me about what I’d eaten. Everyone blamed the Chinese black fungus, mainly because nobody knew what it was, and it sounded far more noxious than the delicious stuff is. They treated me effectively for anaphylaxis.

At the recommendation of my physician I went to an allergist for tests. I mentioned the anaphylaxis to him, and also my suspicion about the McDonald’s burger. In addition to the normal scratch tests, he took a blood sample to test for Alpha-Gal. This test came back a week later positive, with a result of 89 out of 100 (whatever that means), a prescription for Epi-Pens, and cautions to keep away from mammal meat.

There wasn’t a lot of info on the web about the alpha-gal allergy. This was the allergist’s first case, so he didn’t know much about it. I read all I could (which wasn’t much) and found two other people with the same condition. We swapped stories and recommendations. I changed my diet to eliminate mammalian products.

Over the next year I was triggered a few times by things like chicken sausage with pork casings, fish oil pills in gelatin capsules, and Chinese food made more delicious with pork marrow – none of which listed “mammal products” on the ingredients labels. By this time I was carrying two epi-pens and four doses of children’s liquid Benadryl. Eventually I learned what to be suspicious of, and I’ve been without an incident for more than a year now.

I eat a mostly vegetarian diet – stir fry, tofu, fish, lots of healthy and delicious stuff. Every once in a while I cook up chicken, duck, or emu, and I’ve become really good at making veggies savory and satisfying. I’ve lost weight and I feel much better.

I have to be very careful when eating out, because after the Chinese food episode I know now that restaurants aren’t always forthcoming about their ingredients, and why should they be? We’re a tiny minority of people very well educated about our conditions, and able to make judgments about our own food safety. Anyway, at least there are a lot of good, safe vegan / vegetarian restaurants.

Some day when there are a significant percentage of us with this condition I hope that “mammalian products” will be added to food labeling just as peanuts are. Or better yet, a vaccine or something to just fix the condition.

Sharing Stories - French

Never did I think I would be a patient the doctors were clueless about and even some still are. I
have been an avid hunter my whole life and never thought a tick would change my life. Saying I have
had 100 ticks crawl on me or have been spotted on me would not be an exaggeration. However, I do not
remember ever getting bit by a tick around the time my issues started.

They say it comes from a Lone Star Tick. My trouble started about the middle of October 2013.
First, my hands started to itch. It was an itch that scratching would not help. Shortly after, the whelps
began and they were the size of quarters. About a week later I decided I better go to the clinic to get it
checked out. I went and saw my first doctor who said it might be coming from my blood pressure
medicine and to stop taking it to see what happened. 

A week later it was no better. This time I decided to go to the Emergency Room. The doctor told me it was from my cholesterol medicine and to stop taking that. On Thanksgiving Day we went to my sons’ house for dinner. After I ate, the itching started and my lips started swelling bad. On Friday, the day after Thanksgiving, I went back to the ER. This was the third doctor I saw and he told me to call my family doctor and to get tested for Lime Disease. 

The following Wednesday I went to my family doctor to get checked and he drew blood to check that. It
came back and he said I had no problem. Days later I was still having the same symptoms so I called my
family doctor again. He told me to come in and get tested for Lime Disease. I thought they tested me the
first time at my family doctor for Lime Disease, but he told me they checked my sugar.

Shortly after me and my son went hunting in Nelson County, Virginia. On the way back home we
stopped for lunch and I got a pound of pork BBQ. When I got home I ate a BBQ sandwich and then went
to pick up some apple dumplings at church. When I got home, I ate an apple dumpling and within 30
minutes I had broken out in whelps and was itching bad. I had come to the conclusion that it was either
the pork BBQ sandwich or the apple dumplings that caused it. By this time it had gone on for about two
months. I decided to get an appointment with the dermatologist. I explained to her what was going on
and she drew four vials of blood and said she would let me know something in a few days.

On Christmas Eve, I was baking a ham when the phone rang. It was my dermatologist. I
answered the phone and she told me I had Alpha Gal. I said, “What the world is that?” She explained and
told me I was not allowed to eat pork, beef, lam, goat, or deer. As I was getting the ham out of the oven
my dermatologist was calling again. I answered and she said, “Did you understand what I told you? No
pork. No beef. No lamb. No goat. No deer. Only eat chicken, turkey, and fish.” What a bummer at
Christmas. I was set up an appointment with an allergist and was in her office for three hours the first
time I met with her. That is when I learned that I could not only eat pork, beef, lam, goat or deer, but I
could not eat any cheese, ice-cream or milk or anything that came from cows, sheep, goat, lams, and
deer. I also have to carry an epi-pen with me at all times.

Fast forward to January of 2016. Alpha Gal has definitely changed my life style. When I go to a
restaurant I would have to be very careful about what I ordered, it even matters what the food was fried
in. So it is very rare that we go out for a meal. When we have any family get to gathers we have to have
chicken and we have to make certain things certain ways just for me.

I have found out that I am able to have Almond milk in replace of regular milk. I can have Turkey
burgers, turkey bacon and turkey hotdogs in replace of the normal. In replace of regular cheese, I am
able to eat “Go Veggie Lactose Free Cheese” and “Earth Balance Butter” found at Kroger. I also have
found that Ben and Jerry’s have a non-dairy ice cream. 

Sharing Stories - Tammy

I found a white spotted tick under my bra line, strap on my back. Not sure how long it was there, my husband removed it. 

Not sure how long afterward, but it was after the birth of my daughter March 2002.  Later I kept breaking out in horrible head to toe rashes, which made my skin feel like acid was poured all over me. Still had not put two and two together. 

I started keeping a food journal and noticed anytime I ate beef products, I would have this reaction 5-6 hours later. Pork would just make me hurt severely. (I have had RA since 1988) My first anaphylactic reaction occurred 4 hours after eating a hot ham and cheese sandwich. Ambulance ride and two epi shots later I realized I can no longer eat pork either. 

So in 2004 the allergy doctor who still was not familiar with this rare food allergy, told me to avoid beef and pork.  I am an RN, so over the years I would check all ingredients in anything I consumed. 

In 2009 my Rheumatologist wanted to try my on the new med Remicaid Infusion. I still had no name for allergy, but knew I could not do anything with mammal products in it. Called pharmacist and he reassured me no mammal product was in the infusion. WRONG! I went into anaphylactic reaction within an hour. Was made from mouse embryos or something. 

So 10 weeks later we attempted the Orencia infusions. I had the same questions as before and was once again told no mammal. Within 30 min of this infusion went into full anaphylactic shock, required hospital visit. After the 2nd severe reaction, I researched the internet for hours to find that Humira is the only human synthesized Biologic RA meds. Had an reaction to several other meds before this. 

Finally in 2013, found the article about Alpha Gal allergy. I finally had a name for my rare food allergy. 

I now read all ingredients, when I go out to eat, I have the cook make my food in a clean pan and emphasize my allergy. Have had no reactions since 2009. I am very diligent about reading and inquiring what is in all parts of my meal.  Carry two epi pens, just in case. 

Sharing Stories - Janet

Janet:

I have been an RN for 33 years, am 53 years old, and beginning two years ago, I started having episodes that started with hands itching, trunk and thighs breaking out in whelps, seemingly for no apparent reason, and heart racing, just feeling horrible.  I have a pacemaker so I wasn't sure if it was something with that, but have had pacemakers since I was thirty six, I was fifty three.  The first time, I freaked out as it made me panic, so took Benadryl, layed in cool bath, and eventually got better.  

Over the next year, I had more episodes, seemingly out of the blue, but they became closer together and more severe.  Some during the day at work, some at home.  My last reaction happened last November, I was sound asleep, and at three am, woke up with shortness of breath, got out of bed and realized my entire body was whelped up, and with every second, I became unable to talk, breathe, and woke up my spouse, and apparently tried to go to the bathroom, but couldn't make it, and was helped.  I don't remember much after that.  I had lost control of my bowels, somehow found it back to the bed, and was in and out of consciousness.  I tried to say call 911, and as I had many health problems, was encouraged to just calm down and would be OK.  VERY SOON, I was unable to move any body parts, EMS was called, and before they got there, I had sweated so bad, soaked my entire bed, body, and literally felt the life drain out of my body an inch at a time.  It got to my lungs, I thought in my brain, "In 2 more breaths, I will see you Mother," who was deceased for five years, and in two more breaths, I stopped breathing.  I KNEW I was gone.  The next few minutes I was out, and it's true what they say, the hearing is the last to go.  I heard the EMS people screaming trying to get an iv started, hooking all tubes and monitors up on me, and I remember looking down at my body, not being able to move anything, but could see just for another second.  The rest I was told.  They picked me up, naked, with excrement on me, to their stretcher, to their ambulance, and the next time I awoke was in the ER. bright lights all over, tons of people running and yelling out orders, "Her rectal temp  is 91, get a foley catheter, labs, ..."  Had a non rebreather already, highest oxygen level for non intubated person, and labs drawn, chest xray, and I heard "no urine, get heated iv fluids and ten heated blankets and bare hugger, which is a heated electric blanket, then, I went out again.  They said it took many bags of heated iv fluids, and all those blankets to get my rectal temp to just 92, and many bags to get any urine output in my catheter.  In other words, ALL my body organs were shut down, and I was literally dead, and would NOt have survived if not been treated in that little HOSPITAL ER, as they said they had not enough time to get to Little Rock, where the bigger hospitals were, and this little hospital saved my life.  They even asked my significant other if I lived on the streets as I looked SO BAD, my feet were black from lack of oxygen, and I had sweated so bad my hair was soaked, makeup dripping off, and I looked horrible.  Two days later, when I was "better", I had already gone to have allergy testing at my primary care Dr. and was not allergic to ANYTHING, not even dust mites!  So she just told me I would need to carry an epi pen and Benadryl and would be  fine.  

l made an appointment with an Allergy specialist, and after all she heard from me, asked if I was a meat eater.  I said "I am a meat-aholic, and cheese-aholic, that's all I eat everyday.  Just so happens she said, "Well I'm gonna run a blood test on you for Alpha Gal.  In the meantime don't eat any mammalian meat or any dairy.  I thought, she's got to be crazy, I've eaten this all my life.  Three days later, I got the call.  "Janet, your numbers for Alpha Gal are off the charts."  

Now knowing that meant that the one tick bite one year before would change my life forever.  It's been one year since I've had any dairy or mammalian meat, and I've had not one more reaction.  I still carry my Epi-pen, and Benadryl, but I'm not afraid anymore.  I've since learned that many people have died before being diagnosed, so if you think you are just "having a reaction with hives" think twice, get tested, and save your own life. 

Sharing Stories - Violet

Violet:

I believe I have always had the allergy. I have always had weird aversions to food. I would go forever only eating because I had to. I was diagnosed with weird stomach issues from time to time. Always just chalked it up to being underweight. I was from a little town called Hillview in the River bottoms of Illinois. I lived in the hills. I spent my entire life picking ticks off me. I have always said I am like a magnet.

We can fast forward many years. I live in Athens, Illinois I am a 37 year old female. In my spare time I hike, camp, fish. I love to be outside. I know exactly when and where my last flare up would be. I went to Shalom Springs in Brown county Illinois for my anniversary with my husband. We took out our dune buggy and a tent. It was a blast. We also got covered in what we believed at the time was chiggers. We both got terribly bit up. Tiny red things that I could peel off my skin with a knife. My husband and I both treated. He got better. I did not. It ended up turning into a horrible skin infection…

Lets fast forward some more. Funny sick spells start happening. Two that send me to the hospital. I lose a ton of weight because EVERYTHING makes me ill. Doctors do a ton of tests. Things come back okay. Until my husbands friend, who lives 100’s of miles away, tells him of this weird Allergy he has to meat. So for a year my husband is on me saying I need to ask a doctor about this.

I am severely allergic to Beef and pork. None of my doctors really know what to do with me. I am not supposed to consume milk but I do. If I don’t I will have nothing to eat. Everything I read says If I can tolerate it then I can consume. I can’t drink it and sometimes heavy sauces bother me.

I tried to eat beef a few years ago. I certainly didn’t have the normal belly reaction 8 hours after. I had full on hives…I don’t eat beef anymore.

How Many People Do You Know ?

In the course of the last 2-3 years, I have become aware of several friends that have Alpha Gal Allergy.  This week, a very close friend and co-worker approached me and asked about my symptoms and was going to get tested.  For his sake, I hope the test is negative!

The thought occurred to me (again) that I believe the total number of incidences are much greater than researchers and CDC/NIH are reporting.  I have 4 friends that have it.  I have many friends that know someone who has it.  When you start thinking about exponential factors - it can seem like an epidemic!

According to a recent article on NPR, Dr. Scott Commins at UNC is indicating 5,000 cases in the US.  A year ago (from the same source) the number was 3,500.  I would not be surprised if the actual number is much higher than that.  Question:  Where does the data come from?

Article on NPR's site from June 25, 2018: 
https://www.npr.org/sections/thesalt/2018/06/25/621080751/red-meat-allergies-caused-by-tick-bites-are-on-the-rise

 I urge everyone who has Alpha Gal Allergy to self report on this website with a pin on this map. 
https://www.zeemaps.com/map?group=555038
On this map, there are (as of the date of this post) 2,779 self reporting cases

I hope the number of reported incidences (even if self reported) demonstrate the significance of this condition and hopefully more research through federal funding with the CDC and NIH.