I’m a bit overwhelmed by the results of an allergy test I took yesterday. I have known for some time that I had a secondary allergen to soy. I’ve been sick a ton, not able to lose weight, and am deep in a depression that I have been struggling to get out of. Food affects everyone in different ways, and it can wreck havoc on your mind when you are ingesting something that you are allergic to.
I woke up early for the 4-hour test and wrote down a timeline of when the symptoms first started… way back in 2009. I was at a networking event and ate a chocolate square. It had been made from Isogenix chocolate soy protein powder… it was supposed to be healthy. My throat closed in just a few minutes. Luckily for me, the networking event was held at a doctor’s office. An epi pen, Benadryl, and a hospital visit later, the blood tests came back that I had a severe allergy to soy.
Over the last eight years I have had a myriad of reactions to soy from anaphylaxis, hives, shortness of breath, weight gain, and what I call soy brain. With soy brain I can’t walk, am incoherent, can’t think straight, and am lost in a world I can’t claw out of. It is really, and I mean really, effing terrible.
Everyone would say – just avoid soy. Ha! If only it were that easy. In the US we don’t have strict enough FDA guidelines where companies have to list out each and every ingredient or how they process food. We also aren’t told where that food was raised or what an animal was fed before it ended up in our grocery store. Most commercial meat from cows, pigs, and chickens have been feed grain, which contains soy. Finding corn-free soy-free meat is possible, it costs 4x what regular meat does and must be purchased directly from the farmer or in specialty markets.
Another thing, finding candles that are soy-free is next to impossible. Even beeswax candles are blended with soy. Shampoos, detergents, cleaning supplies, pet food (I kid you not!), and personal care products all contain trace amounts of soy. So yeah… avoiding it a 100% has been a nightmare.
Soy in any form is not allowed in my home. I have made a safe environment for me and spend a lot of money on food to make sure it hasn’t been contaminated. I ask a 1000 questions when I go out to eat, whether at a friend’s house or to a restaurant. More often than not, I bring my own food.
So after all of that, WHY am I still reacting? WHY am I still getting sick every other week? WHY can’t I lose weight? WHY am I so depressed that it is a struggle to get out of bed? I needed answers to all of these WHYs.
Allergy, Asthma & Immunology Center of Alaska
I finally was able to get new insurance and get a referral to the Allergy, Asthma & Immunology Center of Alaska. I was told I would be there for 3-4 hours and to be well hydrated and off medications for 72 hours. I filled out the family history questionnaire and it went all the way back to my birth – was I born on time, was I breast fed or given formula? What allergies and ailments do my family have? I have to say, it was quite thorough! I had to text my dad to get most of those answers as I had no idea!
I’ve had a pretty bad nighttime cough for awhile now. I have the app Pillow that records me at night – I am restless, rarely sleep deeply, and cough quit a bit. In any one night, I can wake up 20-30 times. No wonder I am so exhausted all the time! The doctor had me do a few breathing tests with this crazy machine to rule out asthma. Asthma is about the only thing I don’t have though.
I do have something called Vocal Cord Dysfunction (VCD), which is a closure of the vocal cords while breathing. The allergic reactions I have had can cause VCD, which is that throat closure that I feel a lot of times. So my windpipe isn’t closing, but my vocal cords are. Interesting. Those of you that know me in real life now that I have an acute aversion to smells like perfumes and candles, and can’t be around cigarette smoke. All of these trigger the VCD and can close my throat – or really, my vocal cords. It can take days for my vocal cords to recover. Strong emotions and stress are also triggers. Hmmmm.
23 Allergies to Worry About and 28 Foods I’m No Longer Allowed to Eat
I went into the doc thinking I had one, possibly two allergens. Well, how about 23 allergies instead? That’s not all of them either as another blood test was ordered. I will be down right honest – I don’t know in this moment what all of this means. I need to do some more research and figure it out. What I do know is this – I’m allergic to almost every tree, grass, and weed in Alaska. Back in my 20s I landed up in the hospital from an allergic reaction to dried flowers. I thought it was a fluke. Well, I guess not.
Here I am, a certified tree hugger, lover of all the things in the plant world, but they don’t love me back. AT ALL.
This is just half of my back during the skin test. You can take an at home food allergy test if you are curious about what you could be allergic to.
I’m also allergic to Almonds. Well, guess what is in my coffee every morning? Almondmilk. I have been off of dairy for awhile as it too upsets my stomach (that’s a food intolerance, different from a food allergy). I use Almond flour to bake with, I eat almond crackers, I eat all the things with almonds in them. SIGH. Now, this part is interesting. My doc doesn’t want me to completely eliminate them from my diet though. If I did that and then am reintroduced to them at a later date, I could have a serious allergic reaction. For now though, no raw almonds, only ones that have been processed as it changes their chemical structure.
I guess I should buy Cashewmilk by the case from Amazon now…
Now let’s get into the part I just can’t wrap my head around. Let’s start with grasses – easy enough, I just won’t sit on grass directly. Easy, peasy. Nope. That means no wheat or rye, which are primary ingredients in BEER. Rye is worst for me more so than wheat, but still! I eat only game meat right now – moose, caribou, sheep, and wild caught fish. Guess what all of these animals eat? Grass. Whenever I buy commercial meat, I only purchase grass-fed as grain-fed contains soy. F*ck me. When I go back in for my next allergy test, I can take in my game meat to see if I am allergic to it. They can smash it up and do the skin allergy test with it. I don’t have to give up my game meat yet, as these wild animals might process it enough for it to be ok in my system. We shall see.
So here is where it gets fun. While grass is pollinating (all summer long), I have to be careful when eating raw tomatoes (my favorite thing to grow), melons, watermelons, and green peppers. I can eat them cooked as that sufficiently changes the protein and will then not cause a reaction. So glad I just bought a watermelon…
Now onto tress. I’m also allergic to Willow, Elm, Cottonwood, and Oak, and am the MOST allergic to Birch. Of course this is my favorite tree in Alaska!!! Birch trees have an adverse reaction when combined with soy. This combination is deadly to me. Because of their reactions to Birch, I can not eat raw apples, peaches, pears, plums, cherries, apricots, fennel, potatoes, hazelnuts, almonds, walnuts, carrots, snap peas, figs, soybeans (like I would!), parsley, and peanuts. Are you freaking kidding me!?!? Any of these can be the 2nd allergen I’ve been fighting. Any one of these can cause an anaphylaxis response. I’m not allergic to the apple itself, but how it reacts with the shared protein called profelin found in the Birch pollen.
I’m also allergic to Mugwort… no idea what that is yet. With that, I can not eat raw celery, carrots, mustard, or parsley. Then there is the ragweed allergy, where I can not have watermelons, melons, bananas, or gourds like pumpkins or zucchini.
Here’s a recap for everyone playing along at home. I can no longer eat these foods raw. I love to make juices and smoothies. I honestly don’t know if I can have those anymore. I doubt it.
Combine that above list with these common foods that contain soy, you can see that this isn’t going to be simple.
Some studies show that once these have been eliminated from the diet that I can then try adding them back one-by-one. When I do that, I have to remove the skin as that is where the offending protein is often the most concentrated. Once Birch season has passed in late July, I can start twice weekly allergy shots for five years to see if these symptoms will go away. Just shoot me now.
After I eliminate all of these, if I am still reactive, then there is a list of 30 more foods that have to be eliminated. If that happens I will be able to eat air. That’s it. Seriously, there will be nothing left.
Oh, and since we are currently in high allergy season, there are a couple more rules. A shower every night before bed to wash off any pollen I could have come in contact with. No wearing any clothes two days in a row, including hoodies. Bedding needs to be washed with hot water weekly, and everything needs to be changed to hypoallergenic including pillows, sheets, and blankets. I need a HEPA air purifier in both rooms, but most importantly in my bedroom. I am also allergic to ALL cats, but not all dogs. If I play with a puppy, I have to immediately wash my face and I cannot have an animal sleep in the bed with me. The exception is if the dog has been tested to make sure I’m not allergic to him.
HEPA Air Purifier – I need two of these bad boys.
I must also carry an epi pen with me at all times when outside. If I go running, go to the garden, go on an ATV ride… anytime I am outside, I have to have it with me. It is not a case of IF an allergic reaction will happen, but WHEN.
I asked if I should move out of Alaska. He said no… that I am just as allergic to the trees and pollen found in the Lower 48. This is not something I can run from. :/
Well, that’s it. I have quite a few more tests to do including a venom test and another food allergy test.
So, yes, I am quite overwhelmed right now. Be kind please. I’m trying to process all of this and what it means for me on a daily basis. I don’t really know where to go from here.
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Christine Jones says
As someone who is fighting allergies herself, you have all of my sympathy. I am due to get more tests myself because I am allergic to formaldehyde (which is also in everything) but I am still reacting despite all my efforts. So I either need to find out where I’m still being exposed from or find out what else I’m reacting to. I suspect it’s the latter because I am definitely reacting to things that are formaldehyde free like Burt’s Bees lip balm (chap stick contains parabens which I am also allergic to).
I take a daily Zyrtec which keeps me drastically reduced in reactions. Not sure if those kind of pills would help you with the minor stuff? They sure keep my seasonal allergies at bay. I stopped taking them for a bit to see if I still needed them and I was a sneezing machine! Yikes!
I bet you have a secondary allergen. That is what led me to want to get more tests done. I was (and still am) dumbfounded by my results. I have a series of more tests scheduled over the next 6 months. They put me on two Zyrtecs a day plus Vitamin D3. I have not noticed any difference. I also carry a HEPA filter around when I travel and plug it in wherever I go. I’m a bit concerned having a severe allergy to birch and every other tree in Alaska is birch. I stopped consuming Almonds and I’m still gaining weight. I hope you find some answers as I know how frustrating it can be!!!
PS I wish Burt’s Bees would use their old formula and take the soy out of their products.