Confirmed: I'm allergic to an ingredient (PEG) in the Covid vaccines

Hey party people--just like everyone else, I was so relieved and excited when we heard that we had several vaccine options when the announcements came out. However, I had a sneaking suspicion that my special talents as the Food Allergy Queen could mean a possible allergic reaction to the Covid vaccine. I got tested by my awesome allergist team last week, and it was confirmed I'm allergic to polyethyline glycol (PEG), which is a common stabilizing ingredient in these and many other vaccines. PEG is in both Pfizer and Moderna vaccines, and Johnson & Johnson contains polysorbate 80, which is chemically similar and would likely also cause a similar reaction.

Reactions so far from friends and loved ones have been mixed:

"Oh shit!"
"I'm so sorry"
"Will you still get it?/Can you skip the vaccine?"
"What a pain"
"I'm so glad you have a viable plan"

Personally, I'm on the "Grateful, and glad I have a viable plan" path! Yay science!

Today someone asked me, how did I know to get tested? Here was my thought process:

- For me, a person who is prone to allergies anyway (the medical term is atopic) it's always a possibility

 - I've had allergic reactions to a range of medical ingredients previously throughout my life--on top of the skin, as well as under it (rubbing alcohol, oral antibiotics, general anesthesia). So far, no medication allergies, surprisingly. Also I react to toiletries and some supplements, because of the filler ingredients (dairy, rice, mysterious chemicals)

 - But the biggest flag for me is that I had a reaction to a flu shot years ago (fatigue, brain fog, anxiety) for a full 30 days following it. In the old days flu shots included egg--they now have #eggfree versions. But I'm allergic to chicken, not egg (I know I'm a weirdo) and I never got tested for that reaction, even though I'm high risk for the flu due to my accompanying asthma. Despite that I just never went back for another flu vaccine.

[Note: the slow, delayed reaction is also sometimes labeled an "insensitivity"--medically it's an IgG reaction. The immediate anaphylaxis version is IgE. This article was helpful to clarify between the two. I have experienced both types of reactions. Woo.]

With those red flags in mind, and noting that the first cases of anaphylaxis were with people who already brought their epipens, I've been waiting for data to come in! I've kept up on the latest news about anaphylactic reactions globally (check through my Facebook page, that the likely allergen was identified as PEG, and the allergy community's preparation for reactions. (Thank you internet and the openness of the global medical community!) I did some research and found a cutting-edge allergist in the area, Columbia Asthma & Allergy. They not only knew about this already, but offered PEG testing. Yay! I submitted all my former allergy test results and connected them to my previous allergist for records and such, and skipped my daily antihistamine (Claritin) for four days prior to get a "true" reaction.

PEG Testing day

I was told to plan for the appointment to be a few hours, be hydrated, and have a light meal before. To bring my own snacks, and if I was working they could set me up with a desk. 

The room they brought me to had lots of cleaned surfaces, and best of all, an attached bathroom! (I'm neurotic that if I'm going to throw up or something I won't get to a bathroom in time.) They paid attention to my briefing notes that I am allergic to alcohol, so disinfected with a non-alcohol cleaner.

When I expressed deep thanks, the nurse smiled and said "WE'RE YOUR PEOPLE!" 

This is also known as a Miralax test or Miralax challenge, because PEG is not only in vaccines, it's a key ingredient in the laxative Miralax. The plan was to start with a baseline scratch test of the PEG, then over the course of the next few hours, challenge my tolerance levels to determine a good course of action. Ready? READY. 

I read this handy dandy little chart to learn some more tips while I worked some more and waited. 

I reacted to the first test within 15 minutes. 

I felt suddenly woozy, my skin started to itch all over and my visible arm skin started turning red. (I wore short sleeves on purpose!) They asked me to describe how I felt to document it. After about 10 more minutes, I started to get a specific sinus headache between the eyes that felt like the beginning of a migraine, and the doctor who came in said "yes, that's very common for a PEG allergy". He decided to quickly give me two quick dissolve Claritins and 600mg of ibuprofen for the headache. Then they stopped all the rest of the planned testing because I had clearly very low tolerance.

The doctor asked if I'd had a colonoscopy, which I had, and asked if I had had a similar reaction because PEG is prevalent in what's euphemistically called the prep materials. I had to think back on it a bit, but since my focus was bathroom related (Colon Blow jokes here), I don't really recall. I think I would've remembered this headache, though.

Sensitive to a PEG allergy. What next?

This allergy team is ON IT. To prepare me to get the vaccine, they will schedule me for a full 8-hour day of immunotherapy--the same concept as allergy shots. But instead, building my resistance in one day to PEG long enough for me to tolerate a shot, then I need to schedule my vaccine that day or the next morning. It CAN be done--they've already done this process successfully 4x!

Washington state just opened up the vaccinations to anyone 16+, so availability shouldn't be an issue by the time their team is ready for me in May. It takes a week for the custom medication to be compounded. Lots and lots of planning and backups involved. I had already updated my epipen (actually Auvi-Q) prescription as well. Note, that if you deploy an epi for life-threatening anaphylaxis, it only lasts for 20 minutes. Which is why they recommend you bring two, just in case it takes more than 20 minutes to get to a hospital. And you should always go to a hospital if you deploy your epi, because some reactions can happen later.

Take a buddy

As I thought this through, I realized I needed a vaccine buddy, just in case I needed help with my epi and to possibly drive me to the hospital afterwards. And then drive me home. If everything goes fine, then I have a pal there anyway to watch me, because some of the early indicators are things like surreptitious scratching (scratching without realizing it) or face swelling--and sometimes others notice before you do.

Whew. It's a lot of planning. But as I said at the top of this piece, I'm relieved I know what's going to happen. And grateful I have a plan of action, since with my mild asthma I am vulnerable to lung diseases in general, so skipping this is not an option,  Knowledge and planning is your friend. 

Depending on the severity of an allergic reaction, the CDC recommends only one shot
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/allergic-reaction.html

If you deploy an epi or go to the hospital, they don't recommend a second shot. If you have lesser reactions like hives, or wheezing, they don't recommend a second shot, and you and your doctor may need to evaluate the risk going forward.

Whew. This is a lot. Feel free to leave comments or questions. Facebook is better since I check it more often and people can see discussion threads.

More to come, thanks for listening. The FAQ

In bread we trust: Maninis gluten-free mix

Maninis bread using Multiuso mix

You know how, in the movies, when the hero is about to die their life flashes before their eyes in a beautifully-shot montage of tender moments? Well, when I was first diagnosed with my gluten allergy, the montage that flashed through my mind was of all the bread I was going to be missing. Dramatic, I know, but hey--it happened. Bread is one of my fave things ever, and I never tire of it. It is always definitely be on the plate when I play the "last meal" game. Rustic breads, unleavened breads, quickbreads, dinner rolls, croissants, brie and butter sandwiches on rustic baguettes--you get the idea, I love 'em all. So ever since I was diagnosed in 2003, I've been on the hunt for a decent gluten-free bread that didn't taste heavy and fibrous like a doorstop, or the Washington Post.  Most ranged from disappointing to downright criminal so basically I stopped eating anything resembling bread for years.

Although the gluten-free revolution is in now officially "a thing", to quote Rachel Maddow, I still manage to miss out on my bread-love because most of the good commercial loaves out out there (I hear Udi's is great) are based on rice. To which I am also allergic. Which is also why I'm the Queen, of course. I've dipped into the bread recipes of several respected #gf cookbooks, but have not been thrilled. And I've used Bob's Red Mill gluten-free bread mix, based on garbanzo bean flour, which I like for texture, but don't love for the slight beany aftertaste. It was my go-to, until now.

Last summer, I moved to Seattle and discovered Maninis Gluten Free, which bases their gluten-free breads, muffins, cookies, etc. on ancient grains like millet, teff, amaranth and sorghum. Also tapioca flour. Their pre-made baked goods and pastas caused me to gain an *undisclosed* number of pounds that summer, since I finally had bread that both tasted good and had a fantastic texture! (In my defense, they made these insanely good chocolate, chocolate chip and fresh raspberry muffins. The stuff of legends.) Sadly, they no longer sell their pre-made breads at the farmers market in my 'hood, so I'm left with whatever Maninis products I can get at Whole Foods: dinner rolls, fresh pastas and dry mixes. So I tried out the Multiuso (basic baking) mix yesterday using a recipe from their website.

Multiuse flour. They also have bread mixes.

It didn't disappoint! My biggest failure was to not proof test the yeast before I put it into the batter, as a result it took forever to make it rise. Also, I forgot to calculate the temperature difference since it's colder here than my kitchen in California. And, full disclosure, I parked the batter on top of the stove as a warm place to rise, completely forgetting that I have an electric stove, not a gas one. D'oh.

Lovely texture, terrific taste, with no nasty "it's not real bread" aftertaste. I froze half of the loaf for later. Be sure, I will be having some fantastic toast along with my newfound love of vegan butter based on coconut oil that I now make in quantities. I am SO happy, and feel so much more NORMAL knowing and trusting that I have delicious bread (and other baked goods to come) back in my life! You can also order their mixes online. In bread we trust!

*Bonus for those concerned with cross-contamination, the package states that they work from a dedicated facility free of gluten, wheat, dairy, eggs, peanuts, tree nuts, fish, shellfish and soy.

Here's the recipe from their site:

Bread Recipe for Gluten-Free, Rice-Free Multiuso Multi-Purpose Mix

January 19, 2012 by Maninis Gluten Free Blog

 

 

 

 

 

 

34 Votes

Multiuso Multi-Purpose Flour Mix can also make a delicious rice-free gluten-free bread loaf! For your first loaf, please also refer to our Baking Tips to make a perfect loaf the first time!

Ingredients:

7/8 cup warm water
2 tsp active dry yeast
3 Tbsp oil
1 Tbsp apple cider vinegar
1 large egg + 1 egg white
2 cups (278 grams) Multiuso™ Multi-Purpose Flour Mix

Instructions:

Stir yeast into the 7/8 cup warm
water. Let stand until creamy (about
10 minutes). Add oil, vinegar, and
eggs.
Place the 2 cups Multiuso™ in a
mixing bowl. Using a paddle
attachment on the stir setting, slowly
add the wet ingredients. Increase
speed to low and mix for 3 minutes.
Spray an 8-1/2” x 4-1/2” loaf pan
with nonstick cooking spray. Place the
dough into the pan. Using a wet
rubber spatula, gently form the dough
into loaf shape.
Cover pan with a dish towel and let
the dough rise in a draft-free,
preferably warm area. It’ll take about
60 minutes but don’t rush
it—humidity, altitude, and room
temperature make a difference. The
dough will fill the pan and rise above
the top. Preheat oven to 375°F.
Place the pan on the middle oven
rack and bake for 45 minutes.
Take bread from oven, remove bread
from pan and place on a cooling rack.
Cover with a towel and cool before
slicing.

No Cantaloupe in Springtime: food allergy cross-reactions

As I was having a conversation with a friend who was experiencing hay fever symptoms, I remarked to her that she should be careful when eating cantaloupe! Why, you ask? Because my allergist once warned me that ragweed and cantaloupe are related and you can have a food allergy cross-reaction; that people with ragweed allergies often experience mild food allergy symptoms (even if they don't have any other traditional food allergies) such as a tickle or scratchiness in the throat, rashes on the lips, etc. when eating cantaloupe. Because it is a spring fruit, this symptom usually occurs about the same time when most ragweed and other pollens are in the air, so the body is already under attack. It may also explain why you react to some foods, but only during certain times of the year. Isn't that nuts? But it would explain a lot.

It made me think about other cross-reactions that could be out there that us food allergic types should know about. This was IMPORTANT. Why don't our allergists provide us more information like this? *sigh* A quick search on Google (bless them) turned up the following list of allergies/food cross-reactors:

Ragweed:cantaloupe (and some other melons), camomile, honey, banana, sunflower seeds
Birch:apples (although sometimes cooking the apples helps) hazelnut and other nuts, pear, cherry, walnut, almond, plum, kiwi, potato peel, tomato and carrot
Latex:apple, avocado, banana, carrot, celery, cherry, chestnut, coconut, kiwi, mango, paprika, strawberry, potato, tomato, pineapple, papaya, eggplant, wheat (This is called latex-food syndrome. Latex is natural rubber, and this is a whole topic unto itself!)
Grass:beans, green peas, potato, melon, tomato, watermelon, orange, cherry, peanut
Peanuts:legumes, grass, wheat, corn

This is by no means a comprehensive list. But it should get you thinking and paying attention. I think I'm going to start keeping notes to keep track of what's what, and when. I'll try to update this list when I can.

In the meanwhile, be safe, people.

The FAQ