Wednesday, September 26, 2012

Alpha Gal


Perfect for goats....and deer....







I normally do not post about my personal health issues...that's not what this blog is about. It's about the farm but farms have ticks. The tick-related Alpha Gal allergy is not very well known yet can be life threatening so I feel it is pertinent to my readers. So, here is my story.

As my grandparents always said it was tradin' day. Living in the country has a lot of perks but trips to town have to be consolidated. Not only for gas savings but for good time management as well. I was tooling along in PT Patti Petunia (my PT Cruiser) going to town to do my "tradin' ". The bottoms of my feet began to itch. Before I got to town both feet and hands were itching. By the time I was finished with my "tradin' " my torso had started itching. I remembered that I woke up during the night itching. In spite of all this scratching, I still did not realize I was having an allergic reaction; I thought it was poison ivy.

Poison Ivy grows ALL OVER my farm and my goats love it; I get it from them. And, I get it ALL OVER. So, I was bemoaning the fact that a new round of itching burning blisters was beginning.

As the afternoon wore on I itched and scratched my way through my chores; I weeded six raised beds, put new straw in the hens nests, brushed the goats and played ball with the dog. By this time the itching and burning was intense and I didn't feel too good; I finally looked at my body. My entire torso, arms and legs were covered in huge red welts. Also, there were welts inside my mouth.

That's when I knew it was an allergic reaction. I have many, many allergies from food, pharmaceuticals and chemicals so I began to mentally search for something I may have eaten or come into contact with.


My first thought was the road spray. We have an ongoing dialog with the county about the terrible "trash gravel" they put on our road; whatever it is causes dust clouds that rival a Mount St. Helen's eruption. Really. So, in the spirit of detente the county agreed to try a new spray made from trees that would help settle the dust. They had sprayed that morning when I was in the garden so theoretically the spray could have gotten on my body. Plus, I always munch a little produce so I could also have ingested it.

The second possible culprit was a poison ivy spray I had been using; it contained one ingredient on my allergy list.

My ability to think was quickly diminishing; I could see blackness hovering on the perimeter of my awareness. It was like being enclosed in a slow moving whirlwind, the percussion slowly squeezing, growing thicker and darker, pushing me ever closer to the precipice. I put my head between my knees and mentally grabbed for the edge of the cliff and held on. I could NOT pass out. My husband was out of town and if I feinted I was on my own.

When the episode subsided enough to sit up, I reached for my cell phone praying I had service. Our farm is in a valley and the "mountain" blocks the cell tower that is just on the other side. Our son and his family live 3 miles away; I knew he was at work but prayed my daughter-in-law would be home. Struggling to keep the black gaping vortex at bay I pressed send. When she answered I simply said "Come."

I went into full anaphalactic shock and spent three days in the hospital. I hardly remember anything about those three days; I could have sworn I didn't even have a TV in my hospital room but apparently I watched movies with the family. And, I spent a month looking for my favorite camisole then they told me the doctor cut if off of me in the emergency room.

We all racked our brains trying to figure out what the trigger was so it wouldn't be repeated. My family spent hours on the phone talking to everyone and their brothers about the spray on the road and we finally eliminated it. I stopped using the poison ivy remedy but was doubtful about it causing such a violent reaction.

Then one day a family member heard a news report about tick bites--specifically deer ticks also called the Lone Star Tick-- causing a meat allergy. What? No! That's absurd. Never heard of such a thing. No one I knew had ever heard of such a thing. But, truth is stranger than fiction and this sounded like science fiction.

I looked it up on the internet and discovered a whole group of folks who had experienced the same symptoms. I get tick bites almost every day. I am a big meat eater. I usually eat meat three times a day. Oh my gosh. Could I be allergic to meat? A simple blood test would tell. Meanwhile I stopped eating meat from mammals.

I located a lab who processed the alpha-gal test; now all I had to do was go to my doctor and ask him to order the test. I printed out the lab order; all he had to do was sign it.

Silly me. Some doctors hate it when patients babble on about their self-diagnosis especially if that information came from the internet. And, when it's something they never heard of, well, good luck getting past all that I-went-to-med-school-I know things-you-know-nothing barrier. Not only did he refuse to order it he told me the test would cost me thousands of dollars which his side-kick nurse practitioner promptly substantiated.

I was shocked, disappointed and spent a half day railing against the medical profession. What happened to caring about your patient? Empathy? The hippocratic oath which I'm sure says something about getting to the bottom of medical questions. Wasn't he just a tad bit curious to learn about this new medical discovery? Apparently not. I was cranky. I was steak deprived. I wanted red meat and I wanted it now. My resolve hardened. Next time I would use a different approach.

I visited hospitals, clinics and private doctors offices; no-one had a clue about alpha-gal. When I finally selected a doctor and made the appointment I approached it from the standpoint of I simply needed someone to draw blood and send it in. Instead of saying I was pretty sure this is what caused my allergic reaction I said I just wanted to eliminate this possibility so I could start eating meat again. The personnel had never heard of alpha-gal but nonetheless treated me with curious respect instead of condescension and dismissal.

Then I encountered the fact that their regular lab didn't do the alpha-gal test and they did not have an account with the lab who did. We (and I say we because I was on the phone to the testing lab and my doctors office many times)finally got all the details worked out and I had the blood drawn. Whew. Oh, and instead of thousands of dollars the test would be around $50.

This entire process took a couple of months in which time I was abstaining from meat. And, I do love my meat. It took another week to get my results. The doctors office called. POSITIVE. Then someone else from the office called. The next day they called again. They just wanted to be sure that I understood I COULD NOT EAT MAMMAL MEAT. This was serious: no mammalian meat.

Yes, I cried. It's just that I already have a laundry list of food allergies. And, it was summer. And, it was grilling season. And, I do love a good steak. The positive test results sent my husband into hyper research mode. He read everything he could find and he found plenty. He's also a gourmet cook so he is all about creating good recipes.

I can eat poultry and fish. The turkey burgers from the store make me gag. So, my farmboy made his own--they not only taste good...THEY ARE DELICIOUS. And, he does things with fish that make my head spin.

For months now my foot has been hurting. On the bottom where you stand on your tippie toes and on the inside. Some days it just throbs and is swollen and it shoots pain up my foot into my ankle. Some possible considerations were stone bruising, twisting, spider bite (no point of entry), stubbing my toe; I just couldn't figure it out. Then one day I received a post from the alpha-gal chat room that said this person's foot hurt and was swollen. A light bulb went off but as I eat no mammal meat I was puzzeled. What I read next sent me into an oh-no spiral. They were allergic to dairy in addition to meat.

My favorite food in the world is milk. I drink more milk than anyone I know. I love it. I crave it. My ancestry is Scotch/Irish. A lot of blood type O. Freedom fighters. Meat eaters. Milk drinkers. In particular I love goat milk. I have two angel goats I milk twice a day. I love milking and I love milk. So, this was particularly hard for me. And, yes, I cried again.

This is Tessa. She's a Nupine-half Nubian, half Alpine. She has just started giving a half gallon a day. She is scheduled to be bred in a couple weeks.
Daisy (right) and her daughter Button. Daisy gives just over a half gallon milk a day. She will not be bred this year as she has had kids two years in a row so she gets a year off. Button is only seven months old and will not be bred until next year.

I grieved one day; then I decided I was being silly. After all, there are so many folks who have MUCH WORSE conditions than this. I will concentrate on my blessings instead.

It has been a challenge particularly because there is so much hidden animal products and dairy in foods; things you would never even think of. Like pectin in jelly--there's animal and there's vegetable. Like gelatin--beware of capsules. Like lactic acid. I've kept my farm boy busy researching foods that have caused reactions; it has been a trial and error process. We've read every fine print label in our pantry and frig. We spend hours reading labels in the grocery store. At least I have reached a point where I think I know what to avoid. But, eating in restaurants is a whole other story.
My husband has posted our research and his recipes as he perfects them on our website: HERE

He created this page just for alpha gal sufferers and interested parties. You will be able to access all sorts of resources to help with your own investigations. And, we will post new information as we find it.

4 comments:

  1. Oh, my word, what you have been through! Thank you for alerting everyone to this tick-borne allergy so we can be forewarned. I hope you went back and told your doctor who didn't believe you what the results were.

    It took the doctors over 10 years to diagnose my celiac disease. One told me the reason for my crushing fatigue was that I wasn't getting enough exercise. Thank goodness for the internet, or you might never have been diagnosed.

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  2. I am so sorry that you had to go through so much to find your allergy. I was lucky. July 12th was the night I went into anaphalactic shock I was alone just as you were. I'm a 47 year old widow who just happens to live in the country and has type O blood (I read that O-type blood is a common factor). In just a matter of 15 minutes I went from perfectly fine to wondering if I would die. I had severe cold chills, abrupt indigestion, itchy hot hands and feet, then huge welts and hives all over my body, then swelling of my tongue and airway. Luckily my daughter lives only a mile away. It was nearing midnight and I called her cell phone...no answer....I called her house phone...no answer...I began to panic and began downing Benadryls. Luckily she realized it must be serious for Mom to be calling at such a late hour so she called me back...by this time I could barely talk because my tongue and throat were so swollen. She rushed over with her Epipen in hand and we rushed to the ER. It was a 20 minute drive to the ER and fortunately the Benadryl had begun to take effect. They treated me for anaphalaxis and told me to contact an ENT in Danville, VA. I called our local ENT and they suggested I see an allergist in Lynchburg, VA. It took a month to get that appointment and when the doctor said he didn't want to do a full allergy workup and only wanted to do the alpha gal test I was dumbfounded. I had never heard of such a thing... allergy to meat?...from a tick bite? Crazy. The test came back positive so now I too am an alpha gal gal. But the weird thing is that during that month long period I ae3 lots of beef with no major reaction. As I look back, I may have had some minor reactions but nothing like that episode that took me to the ER. My allergist didn't give me much information on this allergy. I haven't found too much online. Heck, I don't even know all of the possible symptoms that this allergy to meat comes with. If you know of any good resources, please let me know. I look forward to trying out some of your wonderful husband's creations.

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  3. Janice...thank goodness you took you health matters into your own hands. Vicky...so glad you are ok...isn't it nice to have family close to help? Alpha Gal is a complicated enigmatic allergy. Be sure to click on all the resources on my web. And, join the chat room on the University of Virginia website; if you sign up for emails when someone comments you will learn a lot about the different reactions. I had a reaction to a chocolate cookie so my husband researched cocoa. Apparently there are some with casein. We have to be SO careful. Thank you both for sharing... :)e

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  4. I would like to feature your blog as well as your husbands recipes on my website ticktalkallergy.com. I too am an Alpha-Gal gal...LOL My first bout with aniphylaxis being in June of this year. Four reactions later I am finding more and more info but still a lack of information being spread to the Healthcare professionals. I would love for you to conact me by phone. Please email me at carrie@ticktalkallergy(dot)com.

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