Afraid to Eat…
Soooo… how did your day go? Me? Not so great…
Up until my mid twenties I was healthy as an ox… well as healthy as a healthy ox could be… are oxen notoriously healthy? Hardy, yes… but healthy… we’ll say yes. Growing up it was my brother who was plagued by the dreaded hay fever and pollen allergies. Poor guy suffered every spring and summer allergy symptoms while I frolicked carefree in the fields of clover and fescue… kicking up pollen as I went.
Things are different now… A stroke knocked me on my booty (literally) in my mid twenties and shortly after I started having digestive issues whenever I ate beef. Over the years doctors diagnosed irritable bowel syndrome, gallbladder issues, joint issues due to favoring my left side (residual effects of stroke), and many other “it might be this” diagnosis. None of the treatment plans helped for long.
Finally in 2013, the proverbial straw broke the camel’s back and I ended up in the emergency room with horrendous abdominal cramps, vomiting, covered in hives, and unable to breathe. That night shots of adrenalin saved my life and for the first time ever I never even felt the needle sticks (I have an epic fear of needles). The relief was amazing as my airway opened, I stopped vomiting, the hives began to diminish, and slowly but surely the abdominal pains eased.
The days that followed had me frightened of everything I ate. My meals became nothing other than oatmeal and water. The emergency room doctor had figured it was an anaphylactic reaction to something I ate but we had no idea what had spurred it on.
Within a couple days I was sitting in an allergist/immunologist’s office answering question after question. What did I eat that day and the days preceding? Had I ever had allergies? Had I been ill? On and on the questions went and then I started my allergy testing. I figured the testing was coming and honestly the thought of many needles being poked in my arm or back (or wherever they poke the million needles for allergy testing) was one that drove me to the brink of insanity. I mentioned my fear of needles, right?
Truth be told, it wasn’t that bad. Four big panels were done covering the entire width and length of both my inner arms from wrists to shoulders and when the panels were pressed down it felt like a stiff bristled hairbrush tapping my skin… not bad at all.
AND THEN… the reaction started! On my right wrist there was a test for “Beef.” Ummmmmm… that spot got angry FAST! I watched as that spot got redder and redder… raising up to Mt McKinley proportions and itching like crazy. I tried to blow on it… that didn’t help. I couldn’t itch it (side note… my husband says “itch” isn’t a verb but I claim it is) because I had to keep my arms straight out on the table. I tried to look the other way and ignore it… nope, didn’t work.
I can’t remember how long I sat there that day nor what they gave me to relieve the reaction afterward but I do remember coming back in for a follow up appointment where I was told I was allergic to beef. It made sense… that night I went to the emergency room I had gobbled down a tasty grilled hamburger… the last one I may ever eat. I was bummed… like just ended a lifelong love affair with someone bummed. I love steak… an awesome New York Strip, medium rare with roasted garlic butter… I’m literally drooling right now. We were the family that got a half of cow to store in the freezer and went through it in six months… we liked our red meat! I was given a prescription and joined the “epi-pen carrying” club. My husband and I showed our boys how to inject the life saving adrenalin in my thigh and we all hoped the time would never come where we had to use that knowledge.
A few weeks went by and I had another reaction that landed me in the emergency room after eating bacon. Back to the allergist/immunologist. Pork was out for me… no more bacon, pork chops, pulled pork barbecue… you know, all the stuff that tastes AMAZING! My blood was taken at that visit and sent to the University of Virginia where studies were just beginning exploring an allergy to mammal meat brought on by the bit of a lonestar tick. This allergy has become known as “Alpha Gal” allergy and my test results confirmed that I did indeed have this allergy. My life free from consuming mammal meat had began.
Sidenote… VERY few people who get bit by the lonestar tick develop the alpha gal allergy but if you have suspicions head to an allergist/immunologist as it is a blood test that can yield exact results.
It was quite difficult for me to get used to eating turkey bacon, turkey burgers, and cutting all mammal meat out of my diet. I scoured the internet and my cookbooks for all scrumptious chicken, fish, turkey, and vegetarian recipes. I found a bunch and my family was amazingly supportive of this diet change. We substituted ground turkey for every dish we had ever used ground beef in and we ate out less because I was honestly scared that an ingredient used would contain some sort of mammal product.
Chicken, turkey, duck, and fish… those were my only proteins allowed unless I wanted to get into insect eating (I did not and do not).
As the years went on I seemed to be getting more and more sensitive as cross contamination (i.e. cooking a chicken breast on the same spot of a grill that a steak or hamburger had previously been cooked on) reared its ugly head and caused several allergic flare-ups. Gelatin got me a few times (sneaky ingredient that is beef based and in a lot of things). A beef collagen casing around a turkey sausage got me once and don’t even get me started on the pork base many chefs use when preparing duck dishes. I did yearly testing each October and for some reason my numbers kept increasing (more severe allergy).
It was around this time, early in my allergy diagnosis, that I realized how spoiled I was when it came to food. I was seriously pitching an adult fit about not being able to eat steaks, ribs, and hamburgers. If I couldn’t have them, neither could my family. I refused to cook any mammal meat at home and had an everlasting grumpy face when anyone ordered beef or pork in a restaurant. I seriously missed meat… how ridiculous is that?!?!
Within the first year after cutting mammal meat from my diet I became severely anemic which drastically affected my energy, digestion, and mood. Not realizing the problem I let it go on far longer than I should have and became so anemic it affected my teeth and gums. Root canal after root canal and several oral surgeries fixed issue after issue over the next year until my anemia was diagnosed and treated.
Late in 2014 my anemia had been treated and I was able to train for a once in a lifetime (though I want to do it again) eight day bicycle ride from San Francisco to Los Angeles, CA. My husband and I cycled with over 250 other riders as part of the biggest annual fundraiser of the Arthritis Foundation (the ride is called California Coast Classic). Each day I was burning through thousands of calories as I just kept pedaling along… by the ocean and up and down some crazy hills (Twin Sisters anyone?). Breakfasts fueled me with amazing spinach omelets and by supper time I longed for red meat to energize my sore and aching muscles. Instead I wolfed down tofu smothered in barbecue sauce (while meat eaters enjoyed ribs) and any kind of chicken I could get my hands on. Pasta was my lifeline and throughout the day I gorged on honey peanut butter sandwiches, pickles, pineapple juice and bananas. My body was starting to get used to the lack of red meat. Iron supplements helped me keep the anemia at bay the next year as I learned how to control it better with diet alone.
Time chugged along and sometimes I found people trying to inadvertently kill me… Doctors who prescribed medications in gelcaps when I specifically told them I cannot take gelcaps (gelatin, beef based, though some are now plant based). Chefs who’d add bacon to a dish (without having it printed in menu) because that just seemed to be the thing to do to make EVERYTHING better. In premise, I agree, bacon does make everything better but for me it’s possible death. Then they look at me like I’m crazy when I say I can’t just pick it off… they think I am the pickiest person on the planet and frankly sometimes I get tired of explaining an allergy that is so incomprehensible that few believe it’s real. I try to be patient and clarify the severity of the allergy so they truly understand that I am not out to make their life difficult. Folks are usually quite flabbergasted and go through the list of what they think I can and cannot eat… automatically assuming I can’t eat chicken, turkey or fish. I usually say if it lays an egg I can eat it and if it doesn’t then I can’t. It’s remarkable how many folks think chickens, turkeys, and fish are mammals J
Fast forward three years from initial diagnosis and we come to today. Today I went in to my allergist/immunologist for two reasons. First, it was about time for my annual testing and second, I had a severe allergic reaction about three months ago that landed me in the emergency room and I could not figure out what brought it on (I had consumed no mammal). I was perplexed. My allergist/immunologist was not perplexed at all. After the usual million questions he told me that I am the few among the few who fit into a “special” alpha gal allergy group.
Apparently, less that 2% of alpha gal allergy folks have a type of the allergy where it gets more and more severe as time goes on for no known reason. These folks have severe joint issues and pain as well as an overactive immune system for things unrelated to histamines. Great, just great. New research on this subset of the alpha gal allergy community has just begun in Virginia and my doc submitted my case to be included. My regular million (I may exaggerate… remember I don’t like needles) tubes of blood were taken today as well as an additional BAG of blood to be sent off to the alpha gal experts in Virginia.
Oh, and wondering what caused my reaction a few months ago? Well, the doc says it was too much dairy. The blood tests will reveal the specifics and severity but as of today I am to cut all mammal dairy from my diet. For real? SERIOUSLY? Those words escaped my mouth as I sat there in that little exam room watching my doc’s fingers fly across his keyboard.
He stopped, looked me straight in the eye and said, “Do you have cancer?”
Bewildered, I stammered “Well… no.”
“Exactly.” He replied.
I understood that yes, it could be worse. So much worse. However, as I walked out that day trying to remember where I parked all I could think about was calling my husband to initiate the pity party for Jhenna. Ice cream… nope. Butter… nope. CAKE…nope. I texted, he called back, pity party ensued and then he said the same thing that the doc did… “It could be worse.”
Coffee, I still have my blessed coffee. It could be worse folks, it definitely could be worse. If you can, head out and have a New York strip for me J I’m dealing better with others eating beef and pork around me and I even cook mammal meat for my family now (grilled great burgers for them tonight and I had a lovely turkey sandwich because turkey burgers are depressing.)
So yes, it could be worse but gosh darnit it could be better too. In the last year I have dealt with severe joint issues in my right shoulder and pain continuing to worsen in my left shoulder. I narrowly escaped surgery in my right shoulder because of a mixed blessing of this alpha gal… massive bone spur formation that allowed muscles, ligaments, and tendons to reattach to a bone spur lengthened shoulder/arm bone where they wouldn’t have been able to if my hyper immune system had not made the bone spurs. Had to have the frozen shoulder fixed but that was a small price to pay compared to surgery!
Looking back to my mid twenties it is quite possible I have had this alpha gal allergy for over 10 years and it has just gotten progressively worse. What started as abdominal cramps and digestive issues has slowly grown to anaphylactic shock. Research is going full steam ahead as more folks are diagnosed and it is better understood… this is good.
So now I’m back to being afraid to put food into my mouth… a dairy allergy is new to me and I fear dairy is in FAR MORE foods than I ever dreamed. We will see…
So now… well, I wait. I wait for results and I redo this week’s meal plan… If I can’t have cheese then NO ONE gets tacos!