Maybe I should live in a bubble. I react to random things, and develop skin welts on occasion for no reason. I react to fabrics – I get these giant red patches on my thighs that itch so badly I break blood vessels. I have major environmental sensitivities, and I have to use scent-free laundry detergent and no fabric softener of any kind. I can’t wear most perfumes as most put me into a giant allergy attack. My skin is so sensitive. I use free & clear scent-free lotion too. All of a sudden within a minute or two of seemingly nothing happening, I’ll start to close up in my sinuses and start sneezing and my eyes itch and water. I am stuffed up all the time and nothing besides constant Sudafed works. At one point I was taking three different allergy medications at the same time. Nothing got better, I just got tired all the time. I am like a precious little flower.
Environmental Allergy Testing
So, in order to get some questions answered, I decided to go to a real allergist (not my general doc performing an allergen test) and see if there was anything going on with my overactive immune system (outside of the autoimmune disease I’ve seemed to collect over the years). I really expected to go into the office and get a food test done.
However, the allergist said since I’ve already had a negative (like to everything, even wheat) IgE blood test (IgE – think emergency room), he thought it would be silly to test again and probably get the same results.
I was actually pretty disappointed, but since it was a new doctor, I didn’t push it. (I know, I should have – argh!) Perhaps my answers were something else anyways, right? He thought that maybe we should delve deeper into the allergens that I have not had tested in my past. He wanted to do environmental allergen testing.
The nurse came in with a box full of tiny needles and she performed over 70 pricks on my back. It was more of a scratch – 70 times in a row – instead of the length and pain of a shot like the flu shot. Since nothing appeared huge based on the scratch test (besides a few trees), they did an injection of about 20 top ones in my arms. If I was going to react, I was going to react to it during this test. These tests were more like shots, injecting small amounts of the allergens into the top layer of my skin. They took a bit longer to administer and each one was annoying. I had about 10 react highly (although research states that the size of the reaction doesn’t necessarily equate to the type of reaction you will have).
What was it really like to go through this kind of testing? A lot easier than I thought. My anxiety brain went into crazy thoughts during those 10 minutes alone like “OMG WHAT IF I HAVE ADULT ONSET ALLERGIES AND MY THROAT CLOSES UP!” The anxiety might have been the worst part. I brought in my phone and just played games for 20 minutes while the tests were happening. It’s just really really itchy. The worst was afterwards, where they slathered cortisone cream all over you and send you home with a Benadryl. I was covered in orange Sharpie and I just wanted a nap. And to scratch my skin off – especially on those last tests on my arms. The welts lasted for about a day and my arms were covered in little scabs for a few days. Luckily, Pure Barre ladies don’t judge.
So what am I allergic to?
ALLERGIES:
- Grass – several found in the SW region
- Trees – several found in the SW region
- Mold
- Cockroaches
- Mice
- BUT NO CATS. <whew>
They prescribed me a prescription allergy pill (Xyzal) and a very expensive (argh) nasal steroid. Don’t worry, I dropped the nasal steroid and just kept the allergy pill – which is way more affordable in the long run.
And let’s take a second and talk about the worst thing, the bill. It was $700 for each round of testing. I believe they sent $1500 to my insurance. I ended up paying $500 cash. And I have no idea if I have another bill. This was far more expensive than any of the blood tests (IgE) tests I’ve done. However, this is probably the most accurate testing I’ve done.
Food Allergy Testing? Drug Allergy Testing?
What’s next? They want to do a penicillin challenge to see if I outgrew the drug allergy I’ve had since I was a child. When I first wrote this blog post, I thought that I wouldn’t ever have the need for penicillin. But as I write this, after a stint in the hospital, I had to take 4 different antibiotics for a hospital acquired UTI that wouldn’t quit. And you know what might have helped? Penicillin. It’s on my list now to go to the allergist and re-try.
Would I like to do it all over again for food, yes. But he’s really right. It will probably come up with the same foods that I already know make me sick. And honestly, would it change? If eggs and dairy continue to make me sick, would I try to go back to eating them again if they make me want to poop in my pants? No. Do I need to spend another $700 on something that will tell me very little? What are your thoughts?
RESOURCES
Thinking about trying to diagnose your allergies at home? Did you get suckered into a food sensitivity test from a naturopath? (Don’t worry, it happened to me too…) To learn more about the pitfalls of DIY allergy testing, and IgG “food sensitivity” testing kits, check out Dr. Dave’s post from Nationwide Children’s Hospital. And more about the unproven science in food sensitivity testing here. And more here.
You poor thing! I went through similar tests a few years back, and came back with basically the same breakdown of allergens, but add rabbits to my list.
The doctor also gave me Xyzal, it has CRAZY side effects, as I learned, I couldn’t stay on it. It gave me such wicked mood swings, depression and knocked me out worse then Benadryl. The doctor told me the “best” over the counter equivalent is Zyrtec. I moved to the Zyrtec cause it had a lot less issues attached!
Love reading your posts! I feel like I can relate all the time!
I actually just went thru Allergy testing again at the end of August. My main goal was to learn which chemicals make my skin itch and provoke instant migraines. I also wanted her to test some different foods. What she ended up doing was what I’d call a “regular” panel and a couple of foods I specifically asked for. After reacting so strongly to dust mites and mold that all of the little dots turned into one huge welt, she loaded me up with 3 different nasal sprays and sent me on my way. (which I’m not even using) I’m super disappointed that I never found out about any of the foods or chemicals. I’m usually a much better advocate for myself, but I didn’t do well this time. I won’t be going back 🙁
I can relate to how you feel, though my reactions/sensitivities are different. Going gluten free helped somewhat but now the list of all sorts of random things that seem to set me off, both environmental and food, is growing longer by the day. My normal doctors refuse to do allergy testing like you have described and just brush me off with the title “chronic fatigue”. So I recently tracked down an Integrative Medical Specialist – a registered medical doctor who also practices alternative medicines and so is willing to look at things in the way that regular GP’s wont and also get tests done that they wont. It’s going to cost a small fortune but I hope it will finally give me the answers I need to get well once and for all! This is a work in progress so not sure where I will end up but wanted to encourage you not to give up on your quest for wellness as there might be other options you could explore 🙂 Ahh the joys of having overactive immune systems!
You *are* a precious little flower. 🙂 I think the longer we deal with our issues, the easier and harder (at the same time!) it is to be a self-advocate. I’m so much better about standing up for myself but then it all gets so exhausting that I don’t find the energy to ask for something else. Good for you to find a doctor and go through all of this. And to spend the money. It sucks but sometimes we have to spend money on important things. And YAY cats!
Wow- I could have written this myself. PLEASE look into mast cell activation disorder- I would not be surprised if that’s the answer for you. There are some wonderful mast cell disorder Facebook groups- “Mast Movement” and ” Mastocytosis and Mast Cell Disorders- An Integrative Approach” are two I love.
I was diagnosed with celiac in 2015 and just kept getting sicker. Finding a specialist to diagnose mast cell activation disorder can be a huge challenge- thankfully I have an amazing doctor that is treating me as though I have it while we try to find the right specialists to diagnose. I have an IGA deficiency as well and some allergists believe when one part of a person’s immune system isn’t working properly- other parts go into overdrive – like mast cells and that creates problems.
Check out the low histamine chef. There’s also an amazing book by one of the leading specialists in mast cell activation disorder- Dr. Afrin- “Never Bet Against Occam”
So far I’m taking h1 and h2 meds (Zantac and reactine) twice a day, I also take Benadryl as needed and eat a low histamine, low salicylate diet as well as avoid triggers as much as possible.
I’ve only had the small panel of scratch tests on my arm (thank goodness not allergic to cats, since I have three!). I was blood-tested for every food under the sun. Surprisingly, I am allergic to absolutely… nothing. So I didn’t find any answers for the cause of my chronic hives (this, in addition to Graves’ disease, celiac, and fibromyalgia). I surprised myself by feeling disappointed that I wasn’t allergic to anything. I guess an undesirable answer seems preferable to no explanation at all, but oh well.
I should add that in my quest for hive relief, I’ve taken darn near every antihistamine known to man, otc and prescription. What I finally hit on is a zyrtec and a Zantac taken together every 12 hours. The 15 lbs I’ve gained since starting this combo is really frustrating and discouraging but the hives were SO horrible, I felt like I was losing my mind.