If you’ve ever read my posts on ER Safety, Hospital Safety, or the Hidden Corn- Medical Supplies post, you probably know that blood transfusions contain corn derivatives. I’ve known this a while and made plans for eventually having to have an emergency treatment that would require corn exposure in order to save my life. But I had always hoped it just wouldn’t happen to me. But of course it did, last July.
Over a year ago, someone commented on my post detailing the challenges of finding corn-free meat by asking why one would not become a vegetarian instead of going to all that trouble.
My diet, and the diet of many people with corn allergy, is so limited that that would be a guarantee of malnutrition. I already fight malnutrition constantly. Adding an extra limitation beyond what I am already dealing with sounds downright dangerous.
This comment was written on a blog that is literally about how challenging a corn free diet is, on an article that goes into depth on just one single aspect of how challenging it is. Either I’m not conveying the magnitude of the problem well, or the person writing didn’t bother to try to understand the problem before offering a solution.
So here’s one more attempt to explain it.
Why is a corn-free diet so limited?
I do have a lot of challenges besides corn. But let’s pretend for a minute that my only issue was a severe, anaphylactic, airborne, and highly sensitive corn allergy. With only that:
- I would be unable to eat almost any food from the grocery store, even whole organic produce, because of the possibility of corny packaging, organic sprays containing corn derivatives, waxes, and cross contamination. People with a more moderate sensitivity to corn will still have many challenges finding foods in the grocery store that they can eat safely. In fact, those that can eat some foods but not others from the regular store have more to keep track of than those for whom this just is not an option.
- This includes being unable to use pre-ground flours or any grains, beans, nuts or seeds that have been shelled, husked, or cleaned using machinery. Because of growing practices, threshing equipment, and packaging, dry beans are incredibly hard for those with corn allergies, even moderate ones, to find. I don’t think anyone has found a brand that works for many super-sensitive people since the Straw Hat beans changed the threshing equipment they were using. Some of us are using local farms who either sell us the dried beans in pod, or get fresh beans and dry ourselves.
- I would be unable to tolerate almost most–or possibly any–vegetable oils. Most super sensitive people can tolerate Jovial olive oil, but some people even react to that and have no safe vegetable-based oil. Those people use the fat rendered from their safe meat, and this is one of the reasons why meat is such an important staple to us. Otherwise all our food is broiled, baked, and braised dry. Those that tolerate several vegetable oils still have dozens they can’t use due to contamination.
- Because of this, I would need to carefully cultivate a network of farms, local and mail-order, who grew completely no-spray produce. If the farm is mail-order I need to negotiate safe handling and packaging in transit. Even the less sensitive need to exercise care in where their produce comes from and what is done to it. For example, citric acid washes and gas ripening cause problems for many.
- Since very few (or zero, if you’re in a cold climate) crops grow year-round, I would need to preserve what food I can eat while it is available so that I can eat it the rest of the year. This is something many people with a corn allergy need to do to some degree, not just the super-sensitive.
- I would be limited in what methods I can use to preserve because Ball and Kerr canning lids are not safe. Most of my food would need to be frozen, necessitating that I keep multiple freezers in my home in order to store what I will eat for the year. Some people with corn allergy can tolerate the ball lids, but packaging and preservation methods still require care.
- This preservation would take about 4-8 hours a week of my time throughout the year, depending on the season. This is one area where sensitivity will determine how much stockpiling you need to do, but then again your average person doesn’t need to do this at all.
- In addition to the actual preservation work, I would need to spend at least 8 hours a week year-round researching new sources of food, creating backup sources of food I already have and trying to track my nutritional intake to prevent against malnutrition, and keeping up with product changes and what things the corn allergy community are reacting to or doing well with. When one is new to the allergy or has had a sensitivity uptick, the time spent is often much, much more. Many people spend years feeling like all they do is research how to eat food safely. This is true across all levels of sensitivity.
- Oh and also work a full time job, either inside or outside the home. I am counting stay-at-home-parenthood and caring for oneself as a disabled person full time jobs.
That’s a lot already. And many of us are dealing with other intersecting health issues that limit our dietary choices or ability to prepare or afford certain foods.
Why is MY diet so limited?
This is already not the most balanced diet, and I know it. I’m working very, very hard on better food sourcing and even some healing protocols (sorry to be vague but I’m not discussing it until it works for me!) to try to fix this. But until then, this is what I have to work with. Removing my fat and protein staples from that list is NOT a good plan healthwise in my opinion.
And then of course, there’s the quality of life/labor issue. Less animal-based protein and fat means less satiety, and also more veggies, fruits, nuts, and mushrooms to purchase (expensive and often just not readily available) and preserve (labor intensive, takes a ton of freezer space.) Because I’m allergic to most of the vegetables that grow in the winter, my preservation schedule is compressed between the months of June and November, meaning that I spend the summer and fall crunching on planning and putting food up for 8-16 hours a week during this period. On top of work.
As just one example, I have to shell my walnuts and pecans myself with the help of some friends. We’ve got it down to a science, but it still takes one person about 40 minutes to shell 1 lb of nuts. And that’s just one food out of the dozen+ I need to put up.
At a certain point, you end up having to prioritize and go without some items when they aren’t in season.
There are also supply problems. I am not entirely sure that my source for walnuts will remain available to me. Each year I ask my friend in California to procure them for me, I am never certain if it will be the last time he’s able to do it. If he is unable to do it, I am faced with either going without, or flying down there myself to get them, pack them up, and ship them back to myself. That’s just one example of the kind of predicament people with corn allergies run into in sourcing safe food.
It’s not that I am against consuming fewer animal products. I would be happy to. I am not someone who delights in eating meat. But I don’t see how to do that in a physically and emotionally healthy way, and I do delight in being alive and somewhat functional.
I am, however, interested in whether it is possible.
If you think that it is possible to have a vegetarian or vegan diet with a highly sensitive corn allergy, here is my challenge.
Challenge 1: Design a vegetarian (or vegan), truly corn-free diet.
Design a balanced diet that is corn free enough for the super sensitive. Meaning, it needs to be sourced entirely from spray-free farms. No packaged or processed products whatsoever. No pre-ground flours, no pressed oils, no husked seeds or shelled nuts. I’ll allow penzey’s kosher flake salt and the Jovial olive oil, although grudgingly as there isn’t one brand of salt or oil every single person tolerates. You don’t have to go out and locate the local farms, I’ll go ahead and assume you can find them (even though this is more than half the battle for many of us). Just create the list of foods. If you would like to include foods that do not grow in your area, you will need to locate the mail-order farm, and you will need to contact them and verify that they are truly spray free.
Now write down the growing season of the foods in your area, and calculate how much of those foods you will need to put up during that season to cover your diet plan through the rest of the year. Go ahead and allow yourself a diet plan that changes seasonally, as you’ll pretty much have to do it that way.
Then come up with an estimate of hours spent and space needed to keep the foods in your plan.
Next, run that diet plan by a certified nutritionist or through a nutritional calculator to verify that it’s truly balanced.
Lastly, sent that diet plan, including the geographical location, crop calendar, preservation schedule, hours spent, and space required, over to me via my gmail at firstname.lastname@example.org. I’ll verify that this diet can actually be followed based on the basic info I provided, and by checking that any mail order sources are actually tolerated by those with corn allergies (often we ask lots of questions and get what seem to be the right answer, then react anyway). If I find a problem, I’ll give you that feedback via email and allow you to make changes.
Once you’ve managed to achieve something corn free, balanced, and that seems possible to achieve, I will publish your response on this blog along with an apology to everyone who has suggested a vegetarian diet that I’ve dismissed, and you will be a hero of the corn allergy community, because you’ll probably have located at least one new source of safe food for us.
Bonus Challenge: Walk the walk.
If you are truly committed to the cause of vegetarianism, lead by example. Follow the diet you’ve come up with for one year, including sourcing the foods on that list direct from no-spray farms, and putting that food up in summer to be eaten during winter. Using corn safe preservation methods. Tell us about your experiences at the end of it. Please. Your reward for this will the utmost respect from me and the corn allergy community, and the satisfaction of knowing you’re an inspiration to others.
Challenge 2: Design a vegetarian diet for me.
Come up with vegetarian or vegan diet plan that is complete and balanced based on *my* restrictions as outlined on my list of safe foods. You can only use what is on the list, nothing more. Calculate the hours spent and space required to preserve as mentioned above and include the nutritional analysis. If you manage this, I will follow your diet plan for a year. But only if you do, too.
May is Ehlers-Danlos Syndrome Awareness month, and this is one of the rare diseases I am diagnosed with. So I’m taking a moment to depart from the topic of corn allergy to give you some info about it.
Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders. EDS causes weak or defective collagen, which can affect many systems within the body- basically anywhere you have connective tissue. There are many types of EDS, and all of them involve joint hypermobility (double-jointedness), fragile tissue, and fragile/easily-bruised skin. Some types of EDS such as Vascular Type can cause arterial or organ rupture because the connective tissue of the organs and veins are weak.
The type I have is Hypermobility Type, which is the most common type. And actually “rare disease” is a misnomer since it is estimated that 1 in 5000 people have this particular type. It’s more that it’s rarely diagnosed.
I’ve written a bit about how to stay safe in emergency situations, but not about longer hospital stays and planned surgeries. There’s no possible way for me to cover every possibility, so the best way to stay safe in a medical context is to familiarize yourself with where corn hides in medical supplies, in food, and in medications, and familiarize yourself with the list of ingredients commonly derived from corn and if possible train a family member or loved one on these things so that they can help advocate for you.
Here are just a few suggestions for staying safe in a hospital setting. This document is very much work-in-progress, but I feel it’s important to share as much as I can think of as soon as I have time to rather than continue waiting until I have time to be complete.
Create an Advance Healthcare Directive
If you are an adult, and you are conscious and of sound mind, you legally should always (to my knowledge) have control of your medical care (or the medical care of your dependent child). However if you are unconscious, or are deemed not to be of sound mind, someone else can (and will) make decisions regarding your care for you (or your dependent). Claiming to have adverse reactions to such commonplace ingredients such as citric acid and dextrose, or displaying fear of just about any and every medication, can seem like paranoia to physicians. It unfortunately HAS happened that those with corn allergies have been treated with psych medication instead of antihistamines, or been given medication that they had severe reactions to while they were unconscious or unable to advocate for themselves.
There is no way to guarantee that this won’t happen, but creating an advance healthcare directive, or living will, can help. Here’s more info on how to do that. What you put in that advance directive will be individual. Please do this as soon as you are able and well ahead of any planned procedures, and work with your team of medical professionals as well as your trusted corn allergy resources on the correct content.
Wear A Mask
If you are airborne reactive this is a must. If you are not usually airborne reactive, have a mask anyway, because it is likely you will be so bombarded with allergens in the hospital that you may become airborne reactive where you usually aren’t. You can find out what masks I use on my product list page.
Negotiate Safe Meds
Get the NDC # for any medication they want to use. This is found on the package insert. The paper package insert has the inactive ingredients somewhere on it, but it is hard to find in all that tiny print. Rather than scouring the inserts, look the NDC # up on DailyMed and skip to the last section, “Ingredients and Appearance.” There should be a section on inactive ingredients which you can cross reference with the corn derivatives list.
I’ve also made a google doc spreadsheet available containing some of my findings on medications. This list was using for open heart surgery for someone, so it isn’t exhaustive of every possible med you would ever want to use. It also was done basically in one night on an emergency basis, so it is really just my off-the-cuff response after eyeballing the ingredients list. However it is a better starting place than nowhere.
When negotiating safe medications, consider not discussing corn. Explain that you have a history of allergic reactions to “excipients and preservatives” in medications, and that you really need your meds to be preservative free for your safety.
This includes premade saline flushes for iv lines. I found that out the hard way when I was recently admitted to the hospital.
When You Can’t Negotiate 100% Safe Meds, Pre-Medicate
I recently had to have blood transfusions, and not only is there corn in blood bags, but reactions to blood transfusions are common even in those without allergy problems. This was scary, but I didn’t have a choice. I needed blood. The hospital admitted me even though transfusions are typically an outpatient procedure, and we agreed on a premedication protocol before proceeding with any transfusions.
If you need to do transfusions or any other procedure that may cause you to react, or if you need to take a medication for which you cannot find a corn free form, you just have to take medication to help prevent severe reactions, and remain under observation so that any reactions can be treated.
You will want to consult with your doctor on the right premedication protocol for you. I use a version of what The Mastocytosis Society recommends. I do have MCAS, however those who have “just” allergies and not mast cell disease can follow mast cell protocols with quite a bit of success. That protocol is:
- Corticosteroids, either intravenous 2 hours beforehand (if this needs to be done right away), or orally starting 2 days beforehand (if you have time to plan).
- If you receive an injection of steroids before a procedure, you need a taper of steroids to begin after the injection wears off to account for biphasic reaction or further irritation from the medication or procedure.
- The length of the taper will depend on the procedure and your particular reactivity. Consult with your doctor.
- For me personally, my preferred steroid injection is solu-medrol (methylpredisolone sodium succinate powder for injection- mixed in water only, no ethanol).
- Intravenous or intramuscular benadryl 25-50 mg 1 hour before and 25-50mg IV, IM, or orally every 4-6 hours after until chance of reaction is passed. (This may be several days depending on the procedure or medication.)
- This needs to be intravenous or intramuscular if at all possible because it is much more effective than oral.
- Hospira brand is safest for me diphenhydramine hcl for injection is safest for me.
- If you are concerned about having a reaction to the benadryl or an ingredient in it, wait until the steroids have kicked in, and choose intramuscular over intravenous as it will “mute” the reaction somewhat.
- You may be able to use another strong H1 antihistamine such as hydroxyzine if you cannot use benadryl. Consult with your doctor.
- Oral, intravenous, or intramusculer H2 antihistamine (pepcid 40mg or zantac 150mg) 1 hour before and every 4-6 hours after until chance of reaction has passed.
- This increases the effectiveness of the benadryl (or other h1 antihistamine).
- This is less of a big deal to do IV or IM, and can be oral. Meaning if you can’t find a safe injectable version, ask the hospital staff to allow you to take your own H2 if you have one.
All meds should of course be prervative free and corn free.
If you have a corn allergy, it’s highly unlikely that you will be able to eat any hospital food, even if they swear they can cook you something corn-free. Most people, not even medical staff, just cannot understand what “corn free” is to the degree that we have to avoid it. If you know you are going to have be inpatient, cook yourself enough meals in advance to cover your planned stay and then some, and keep it in the freezer. If you don’t have a lot of freezer space, consider investing in a separate freezer. Even in an apartment it’s likely you can make room for at least a small freezer. You can likely create some vertical storage shelving above it to reclaim some of that space. (I originally said you can store stuff on top of it, and then found a TON of manufacturer advice not to do that because it interferes with venting!) If money is a concern, you should be able to find used freezers on craigslist, although you’ll possibly need to do some work to decontaminate it since it may have had unsafe food in it. (I realize that *any* money is still money that many of us don’t have, and I totally understand and sympathize- I’m just making my ideal-world recommendations.)
As far as what to cook ahead, that depends on your preferences and safe foods. I honestly haven’t found too many things that I eat that don’t freeze and reheat well, maybe cooked eggs (which I personally am allergic to) and some types of dairy products such as cream and un-melted cheeses may get gross. When cooking for hospital visits, probably go with things that are easy to chew and somewhat bland as if you aren’t feeling well you may not enjoy chewing or spicy items, and even consider freezing or canning (more on corn-free canning here) some plain bone or meat broth in case you’re feeling too ill to tolerate anything else. I try to keep bland soups, baby-food style meat purees, broth, and fruit purees on hand for illness or a possible hospitalization.
You will need to get permission from the hospital to bring your own food. Be polite but firm about this- it’s not optional. You will also need to arrange for a place to keep frozen food and a way to reheat it.
Create a “hospital bag” (or in my case a suitcase) that contains everything you need for a hospital stay. The exact contents will depend very much on your sensitivity and needs, but I would err on the side of over-preparing, as you may find that in a hospital context, your reactivity and sensitivity ratchets up quite a bit.
Here is what is in my hospital bag:
- 3x Twin Sheet Sets (I will react to the laundry detergents used by the hospital so need to bring my own clean bedding)
- 3x spare twin fitted sheets (You may sweat, bleed, or otherwise soil the sheets in a hospital context, so bring spares!)
- 2x Vog n99 Carbon Filter mask *with* head strap accessory.
- 2x Extra mask filters (I use I Can Breathe removable filters inside my vog mask to “double up” and help protect from airborne reactions better.)
- 1x 3M Half Facepiece Respirator with the 3M 60926 Multi Gas Filter Cartridges.
- 4x hospital gowns (washed in my safe detergent)
- 4x hospital socks (“hospital socks” refers to the kind with the treads on the bottom so you can’t slip)
- 2x allergen pillow cover
- 2x blanket
- 3x panties (probably I could stand to have more, who knows how long I’ll be in there)
- 6x cloth menstrual pad
- 3x cotton lined waterproof mattress pads (mostly for sweat, I hope, but who knows!)
- Towels, washcloths
- body soap/dish soap
- baking soda (For brushing teeth, washing hands, cleaning “whatever” – I use Karlin’s Finest)
- shea butter (dry skin or lips, NOW brand is safe for me)
- jojoba oil (dry skin or lips, NOW brand is safe for me)
- hand soap in pump bottle (this is largely for setting in the room for nurses and visitors to use instead of the corny stuff)
- phone charger (with a nice long cord so you can use it from bed while still plugged in)
- coban tape
- t-shirt sleeve for under pressure cuff (many react to the sanitizers used on the cuffs between patients)
- Safe plate, bowl, spoon
- HEPA filter (run in your room constantly and request the door be kept closed)
- plastic tub to use as a dish washbasin
- Safe water filter or safe bottled water (many corn allergics react to tap water or certain brands of bottled water such as Dasani)
- safe sippy cup with straw (if you’re sick you’ll spill- heck, I spill when not sick. I use a mason jar with a silicone koozie, a plastic sippy lid, and silicone straws)
- 3 days worth of all daily & rescue medications. (The hospital will not want to allow you to take your own medications but if you use the instructions above to check for corn in the medications they want to administer, and cannot identify a corn-free option, they may allow you to take your own if you calmly and rationally explain to them that you are likely to react to the excipients and preservatives in the medications they have on hand.)
At shift changes, nurses don’t always carefully read every patients’ chart, and may mix up and forget individual patients’ needs. Hang signs anywhere there is a hazard for you to help reduce the chance of them doing something that will make you react. I have a home laminator and have pre-printed laminated signs in my bag. You can certainly use neatly hand-written signs though. But better to come up with what you need in advance than scramble while sick/injured.
- No HAND sanitizer sign for front door
- Keep Door Closed sign for door
- Mop Floors with Water Only sign (consider getting translated into some commonly spoken local languages in case the cleaning staff do not read english well)
- small do not use signs for hand soap & sanitizer
- NO DEXTROSE NO GLUCOSE NO CITRIC ACID NO LACTIC ACID sign for iv pole
In an emergency, an manual draw epinephrine injection kit is NOT an appropriate replacement for an autoinjector.
Additionally, the syringe based auto injectors such as Adrenaclick are NOT an ideal sub for a cartridge based autoinjector!
A cartridge-based autoinjector is the SAFEST and most SURE way to save lives in an anaphylactic emergency, and carrying anything else could cost even more lives. As it is, fewer than half of patients in a 2015 study were able to correctly administer epiniphrine using the brand-name autoinjector.
- For people who are not medical professionals, draw time on a manual injection is too slow. Seconds count, and an average parent trying to inject their child takes two and a half minutes to draw up.
- If you have having even a moderate reaction you will be too compromised to inject yourself with a manual draw. Anyone who has ever fumbled around looking for their asthma inhaler, benadryl, or even car keys to get to those things, knows this from experience. Trying to draw up, remove air bubbles, and then *remove your pants* to inject yourself during anaphylaxis is out of the question.
- The syringe based auto injectors such as the adrenaclick may not deliver a sufficient dosage of epi. The adrenaclick delivers only 25.7% of intended dose while the Epipen cartridge-based injector delivers 74.3%.
- Syringe based solutions, either manual or auto injection, cannot reliably be used through clothing. Thick clothing such as denim will bend the needle and must be removed or cut away, costing seconds that could be the difference between life and death.
It’s getting to be my travel season again, and while I haven’t solved most of my problems, I’m at least getting better at working around them.
My last travel post was nearly a year ago, and was my first major trip since developing an intense sensitivity to corn, multiple food allerges, and becoming airborne sensitive:
Since then I have traveled to:
- Austin, Texas for the Housecore Horror Film Festival (yes, as in movies! But they didn’t serve popcorn so I could actually go!)
- Oakland and San Francisco, CA (twice!)
My upcoming trips:
- May: Baltimore again, for Maryland Deathfest
- June: NYC! For my first time ever! For Martyrdoom, and also to see Hedwig with Neil Patrick Harris! !!! !!!! !11one!
After a few trips like this, I am somewhat of an old hand at traveling. It doesn’t really get less awkward, but I just am more resigned to it. I refuse to quit living my life and doing things I enjoy just because my body is a jerk, so I am going to keep going through this effort and expense.
The topics covered in my previous post are still germane, and I still have a water problem that is not corn. I haven’t solved this water problem. I am still shipping my water ahead. Here’s a rundown of my travel “routine”:
I just received an email from my compounding pharmacist out of the blue that he was able to order some Xyzal for me and that it’ll be in in two weeks! His timing couldn’t be better, as I am dealing with some pretty horrific seasonal allergies right now.
And that’s really all I had to say. I’m on something of an unofficial hiatus right now, taking a bit of a breather after a summer of intense preserving. Because I am allergic to pretty much every vegetable that grows between October and May, I had to spend June-September preserving enough food for one adult to eat for 7 months. That’s, um, a lot of food. No cheating and going to the grocery store- if it ain’t in my freezer or growing in a pot in my living room, I can’t eat it. Well, other than pears, apples, oranges, clams, and oysters. Those are the only foods I can get safe nearly year round.
But the details on that is for another post, when I’ve had a bit more time to rest and recover. Just wanted to share my victory! If you’re still trying to find corn-free non-drowsy antihistamines, just know that it IS possible!