A Letter to My Friends

This started as a “note” on Facebook and sat around in draft format for months.  I decided to make it a blog post. 

Hey friends. I really appreciate the questions of concern and expressions of sympathy that I’ve gotten from people since my health took a serious dive 5 months ago, and I do not want anyone for one second to feel that their interest in my well-being is not appreciated. It most definitely is.  Having this kind of intense personal disaster has really showed me how caring and wonderful people are really capable of being, and has also showed me how many of the folks I have gotten to know over the last couple of years are actually my friends, not just fair-weather acquaintances.

So first, thank you SO MUCH to my friends for being awesome human beings and making me feel truly loved and like part of a community.  I love you right back, and will do my level best to be there for you in the same way you’ve been there for me.

Now that I’ve said that mushy stuff, I want to tell you a few things about what it’s like to be me. Some of it can be generalized to all chronic health conditions, but I don’t want to claim to speak for anyone but myself, you know?

My hope in sharing this information is that you can use it to be an ally and educate others around you when you hear them being insensitive towards people with severe food allergies and other chronic and long-term health problems, and so that you can possibly avoid saying stuff that, while well-meaning and well-received when coming from you, is also the kind of thing that less awesome people say to me all of the time, and don’t mean well when they say it.

Things Not To Say to Me

“Are you feeling better?”

This is a great question to ask of someone who has had a cold or the flu, or possibly even a surgery to repair a one-time injury. But for myself and many others, our health condition is NOT one that is going to magically go away. For some conditions, a miraculous recovery is not outside of the realm of possibility, but it’s usually extremely unlikely. While I understand that this question means that you care about how I am doing and hope that I am doing well, this particular phrasing makes it feel like you actually expect that I am going to suddenly STOP being allergic to the entire world and start having a “normal” life again. Warm fuzzy sentiments aside, there is always an undercurrent of alienation at having my situation so massively misunderstood.

Unless of course I actually did just have a cold or the flu, in which case thanks for asking.

“But you *look* healthy.”

Thank you for the compliment. It’s a good self-esteem boost.  And I do genuinely take it as a compliment when it comes from friends. But please understand that other people have used this phrase to imply (or state outright) that because I look healthy I am healthy and should quit claiming otherwise. You can understand why it’s unpleasant to hear someone I care about utter that phrase.

“I really know how you feel.”

Actually, none of y’all have ever said this to me, and I consider that an indication of my excellent taste in friends. But, just in case it ever occurs to you to do so, please consider carefully.

Unless you have:

  • Eaten two foods, and only two foods, without spices or cooking oils, for weeks on end because everything else made your throat close up .
  • Had to carefully plan your weekly shopping trips because you can only buy food you can eat from specific vendors at the weekly (or bi-weekly, for some people) farmers’ market and would literally face going hungry if you didn’t buy enough for the coming week.
  • Had to consider carefully what to bring with you every time you leave your house because you can’t eat or drink anything that you didn’t bring yourself, not even the water.

Unless you’ve been in that position (and actually a number of people I know have: it seems to be an unfortunately common experience for people with severe food allergies) then no, no you don’t know how it feels. I understand that you sympathize and that you can imagine how it feels, but no, you don’t know. 

How My Life is Different Now

This list is not exhaustive, obviously. It’s just a collection of the more outlandish changes I’ve had to make/limitations I’ve had to accept in my life due to my corn allergy.  I’m not writing this up to gain sympathy, though I do spend plenty of time feeling sorry for myself. I’m just trying to give you an insight into how many basic daily tasks are affected by such a non-exotic health condition.

I have trouble finding water to drink.

Most brands of bottled water use vegetable (corn) fibers in the plastic bottles, and often use corn-based chemicals to disinfect the water. Even a corn-based antimicrobial agent in a water filter will leech enough corn into the water to cause me an issue. Seattle tapwater is so far safe for me, but not all tap water is depending on how it’s treated. I don’t know a lot of people with water softeners, but water softener salts also contain corn.

I cannot drink *anything*  from a glass or cup at a bar.

Actually, I can’t drink or eat anything from the dishes in a bar or restaurant because I am allergic to the soaps and sanitizers used on the glassware, and seem to also have random problems with plastic cups, either the plastic itself or something they are dusted with.  If I am at a show and need to drink water, I have to go drink from the bathroom tap,and hope that the tapwater is not treated with corn-based chemicals, which it sometimes is. The one smidgen of hope here is that if I can identify a safe pre-bottled beverage, like a cider or a gluten free beer, and found a bar that carried said beverage, I could have that.

I can’t eat out at a restaurant, ever.

That was covered above, but it is significant enough that I felt it deserved a bullet point. Even if they miraculously used a dish detergent that was corn-free, most cooking oils are cross-contaminated with corn, and there’s no way they could get their pans clean enough to be safe for me. Related to that, I also can’t use dishes from other peoples’ houses unless I rewash them with my own dish soap.

I can’t see movies in the theater.

My allergy is airborne, so places with popcorn are no good for me. While I might be able to make some arrangements to visit a theater while it is not busy and take plenty of antihistamines ahead of time, the prospect is risky and so it’s not something I can do often.

I can’t eat most produce and have very few available protein sources.

We’re talking whole, organic foods here. Organic produce is waxed, gassed, and sprayed with corn-based “organic” substances.  Organic, pastured meat is sprayed with organic corn-based disinfectants before carving and packaging, and then placed in packages with soaker pads that are soaked in corn-based antimicrobial agents and then wrapped in plastic that is dusted with corn starch. Beans + grains would be a good option for protein, but I seem to react to those too. I haven’t yet figured out if this is a separate allergy or contamination in the fields/storage facilities/processing facilities. So no, just because it “seems” natural or organic doesn’t mean I can eat it.

Going to crowded places is a health hazard for me.

Cleaning products, perfumes, laundry detergent, lotions, and conditioners are all full of corn-based chemicals, even the “all natural” stuff. Going to an art gallery, a concert, or even  just the grocery store usually leaves me with at least a mild headache, if not a full on hay fever-like reaction.

There is a nonzero chance that in a medical emergency, health care providers will kill me while trying to save me.

There is corn-derived chemical in lactated ringers solution, which is the IV fluid that hospitals give you if you are dehydrated and before a number of medical procedures, and a corn sugar (dextrose) is often added to that solution. There is also corn sugar and other corn-derived chemicals in many other injectables, and corn starches and sugars in most prescription drugs. I have never been injected with dextrose to know what would happen, but considering that my reaction to ingested dextrose is anaphylactic, I suspect an intravenous dose would be disastrous.

This is probably the way my life is going to be forever.

A miraculous recovery isn’t *completely* impossible, and it does sound like it has happened that people have been as sick as me and come back from it to a more reasonable level of sensitivity. But I absolutely cannot assume or plan for that being the case. So this is my life for now. The best I can hope for is to find more efficient ways to cope with the accommodations I have to make so that I can go back to focusing on living life instead of just surviving.

Thank You For Your Patience

My other hope in sharing this is that you will be understanding about the fact that I cannot seem to STFU about my allergy. Because it pervades every single aspect of my life, the topic feels relevant to most conversations.  And since it’s on my mind a lot, it’s pretty hard not to talk about it, even if I don’t really want to. I often feel self-conscious about talking about it, but I can’t seem to stop myself.

So if you’ve actually read to the end of this, I hope that you’ll understand why that is and have some patience with me when I go off on a tear about how corn is in absolutely everything and I can’t go anywhere or eat anything ever again.

Corn Free Antibiotics

There is no such thing as a 100% corn free antibiotic. BUT, if you have an infection and need a safe-ish antibiotic right now, here are some possible options:

Rocephin (Ceftriaxone) Injection

Many corn allergic folks have had success with a rocephin injection. I have never personally done this, but here is the package insert. It looks like it can be prepared in water or in ethanol. Ethanol is corn alcohol, so request that the solution be in water, and double-check the package insert in the office to be sure that the inactive ingredients look safe. (Cross reference with the corn allergens list.)

Additionally the rocephin injection is often combined with a numbing agent, lidocaine, which can be skipped. Preservative free lidocaine (Xylocaine is one brand) can be corn free but you will need to check package inserts, not all clinics have the corn free version in stock.

There may also be other injections that could be safe. Check using these resources: how to find inactive ingredients of medications.

Update 2015: I personally have gotten this injection… There are a few different brands but basically I got a Ceftriaxone injection that was a powder with only the active ingredient. My doc mixed it only with distilled water. It hurt a LOT. I am a grown up with a fairly high pain tolerance, and I was crying a little.  I did have a mild/moderate reaction from it that passed within 3 hours, and I believe it was a corn reaction from the growth medium, but I don’t really know. I recommend pre-treating with any safe antihistamines you have before getting the injection.

Zithromax Brand

The Zithromax brand, 600 & 250mg,  are very corn lite.  Not corn free, but I’d take them in a pinch. The generics all seem to have corn starch, so brand name only.

Cephalexin

There are many corn-lite formulations of cephalexin.

Here’s a list of all the formulations of cephalexin and their inactive ingredients. Depending on sensitivity, you may be able to get away with taking one that just has as few ingredients as possible and no corn starch.

If you need pills and can’t tolerate potentially corny derivatives, you will need to have your antibiotics compounded. Here’s some good advice on how to do that. 

Note that much like probiotics, antibiotics are not 100% corn free just due to what they are. They are a product of microbes and are almost always grown on a medium containing corn sugar.

So with that in mind, I would avoid antibiotics as much as possible, opting for natural remedies as much as you possibly can. But sometimes you have no other choice, and when that’s the case, be aware that even if you get the “cleanest” antibiotic you can get your hands on, you will still be getting some corn, and prepare yourself accordingly.

Tips For Asking About Corn In Products

There are a lot of ways to ask a vendor or manufacturer about what is in their product. I’ve been doing it on and off, with varying degrees of success, for about 6 years. I don’t have it down pat, but I have definitely learned a thing or two about what hasn’t worked for me.  It’s not that there’s really a “right'” way to do this: the right way is the way that gets you good information that you can make safe decisions with. But for me, given the style that I related to people in, there are some things that seem not to work well for me and some that seem to work better.

Less Effective: “Is there any corn in this?”

When I was first diagnosed with a corn allergy, my format for asking this question was something like: “Hi there, I am allergic to corn. Is there any corn in your product?”

That worked for me for a little while. I’d ask, and people would say no, and I’d eat the food and be fine. Until the time I asked that of a famous bratwurst company, and they incredulously replied no, there was no corn in their bratwurst, and I believed them. I reacted, and badly. The customer service representative that answered my email apparently was envisioning whole kernels of corn being added to the meat grinder, and given that image, truthfully answered the question. What he did not realize is that their product contained corn dextrose.

Beyond just corn sugars and ingredients directly made from corn, ingredients that are commonly products of fermentation such as citric acid cause terrible reactions for more sensitive corn allergics because they are grown on a medium containing corn sugar. Customer service representatives will not know exactly how these ingredients are made as they are just reading from a script or information sheet.

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My Secret Grapefruit Ritual

Actually, it’s not a secret, and it’s not even my ritual. And it works for other citrus fruit as well. Half of it was taught to me as a child, and the other half was *just* suggested to me a couple of weeks ago.

But back up. Let’s talk about why I even have a grapefruit ritual. It’s because of the wax. Many fruits and vegetables, even organic ones, are waxed to preserve them and to improve their appearance before they hit the grocery stores/co-ops. The wax on organic fruits and vegetables is *supposed* to be from carnauba wax or shellac, which *should* be corn-free. Unfortunately, like many other things that *should* be corn free, they aren’t. I’m not totally sure what’s corny in them, but I suspect that the wax is mixed with a solvent like ethanol (from corn) to allow it to coat the fruit better, and then the ethanol evaporates leaving the wax and the corn particles behind.

Anyway, I haven’t ever really managed to peel a waxed apple, cucumber, zuchinni, or other thin-skinned fruit or veggie carefully enough to avoid contaminating the inside with wax residue from the peeling instrument. No matter how carefully I tried to peel them, I would end up getting some wax in my mouth and paying the price. So I just didn’t eat most fruit and many veggies out of season for a long time, opting instead to only eat produce from local farmers whom I could question about their practices. Then I became allergic to pretty much all winter vegetables, and I got hungry enough to get adventurous. With a little advice from some other adventurous corn allergics, I was able to arrive at a way to eat thick-skinned fruit like grapefruit safely.

This method is working for me. Your mileage may vary.
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Finding Inactive Ingredients of Medications

There are a few different ways to find inactive ingredients of a medication. My absolute favorite by far only works for pills, but I always check it first. It’s a brand new search engine from the NIH called Pillbox. In fact, it’s so new it’s still in beta stages.

This search engine is intended for identifying “mystery” pills, but I’ve been using it to get a quick list of every manufacturer of a particular drug and the inactive ingredients.

Here’s a brief tour:

pillbox_0

Go to http://pillbox.nlm.nih.gov/ and click on Advanced Search (picture on the right).

pillbox_1

In “Drug Name,” enter the name of the drug you’re looking for. In this case, I’ve entered cephalexin, the generic name of Keflex. This will give me both the brand-name drug and all generic variants.  Click Search.

cephalexin_2The search results will give you a listing of all known manufacturers and dosages of the drug, with the inactive ingredients listed right on the page. You can click hide/show next to “Inactive Ingredients” to see the full listing.

If I can’t find what I’m looking for on this search engine, or need more details, my next go-to search engine is NIH’s DailyMed database, which is an archive of package inserts for all kinds of medication and medical supplies.

For each med listed on DailyMed, there should be an “ingredients and appearance” section on the bottom.

dailymed1

The inactive ingredients should be listed in this section.

dailymed2

 

Corn Allergy Safety At the Dentist

I just got back from my first corn-free dental cleaning, and no reactions! My last dental cleaning was a bit over 6 months ago, and two weeks after that visit, I had a Tom’s of Maine toothpaste that contained corn-derived sorbitol send me to the hospital. As you can imagine, I pushed back my upcoming appointments for fillings so that I could figure out how to get them without landing in the hospital. Fortunately the office manager at my Seattle-area dentist is just a wonderful human being, and was able to help me navigate this successfully. Our process was convoluted, but we eventually got to the right place for my specific needs. However, if I had to do this all over again, this is what I would have her do:

  1.  Get a list of all products that could be used during a dental cleaning, filling, or root canal. This includes gloves, cotton or gauze, paper bibs, and other “incidental” products, as well as products that are also directly used in your mouth, on your lips, or injected.
  2.  Get the package insert/MSDS for each. Make photocopies and just hand me the sheaf of them to go over.
  3.  Study up each of the products on my own, using google/the Corn Allergens list, and questions to the Facebook Corn Allergy and Intolerance group or the Delphi Avoiding Corn Forums to determine what should be safe.
  4.  Return with a list of approved items to use. And a gift to show my appreciation.
  5. Show up on the day of my appointment with an instruction sheet to remind them of what should and shouldn’t be used, and what to do if a reaction occurs.

Following is a list of the possible places to check for corn at the dentist. This list is written with the most sensitive in mind, including those who react to water treatment chemicals, so not all may apply to you:

  • The “bib” put around your neck could be dusted in corn starch. Bring your own cloth towel.
  • Water for rinsing or swishing. Water could be filtered through a corny filter or include corny softener salts. Additionally an additive is sometimes used to help plaque rinse away better, which could be corny. Bring your own safe water and rinse and swish with that.
  • Sonic cleaning devices which spray continuous water. Find out where the water comes from and if you are in doubt, ask for the “old school” polish and scraping tools to be used.
  • Chapstick or vaseline on  used during a procedure to keep lips from cracking. Bring your own safe.
  • Mouthwash. Skip or bring your own.
  • Dentifrice/tooth polish. Skip or bring your own. I use bentonite clay from living clay co for tooth polish.
  • Sanitizer used on tools will be corn derived. Wash and rinse them in safe soap and water. This includes the cup that holds the dentifrice during a cleaning- I kept having a mild reaction until we realized that and rinsed the prophy cup.
  • Floss- the wax can be corny. Bring your own.
  • Cups/containers for water and other supplies, including the cup that tooth polish is kept in. Bring your own containers or ask that the containers they use be rinsed first.
  • Gloves- can be dusted with corn starch. Make sure they use unpowdered.
  • Numbing injections- inactive ingredients can contain corn, usually dextrose. Check inactive ingredients.
  • Filling adhesive.
  • Dissolvable sutures are corny. Use the non-dissolvable and have them rinsed before use.
  • Xrays: Film or covering over the receiver if digital. If you tolerate any plastic bags such as ziploc brand, bring those along to cover anything being placed inside your mouth if possible.
  • Intravenous solution: Lactated ringers and dextrse are corny. Request saline only.
  • Topical numbing agents: Skip them entirely, they are pretty much all corny.

Numbing Injections

Carbocaine is the “standard” that most corn allergy folks have used, but there are other possibly safe injections. Septocaine and Zorcaine have been used by many but may cause issues for those with sulfa allergies. Preservative free lidocaine, both with and without epinephrine, has been used safely as well. In all cases, check the package insert and compare the ingredients against the corn allergens list before using.


Here are my instructions for a dental cleaning. You will need to personalize to yourself, especially the second half, but it’s a good place to start. 

Here is the last instruction sheet I used for a filling.

Things that could be problematic but are notably NOT covered in my instructions: airborne contact with perfumes, fabric softeners, etc, and the bite contact sheet they use after a filling to see if your teeth are coming together right. I did not check the MSDS on that sheet, just let them use it.

How NOT to Treat Eye Infections

Spoiler alert: This is more of a narrative of my mishaps, and does not end in a solid conclusion about the correct way to handle eye infections with a corn allergy.

I don’t know why, but for some reason after going most of my young/young adult life without an eye infection, I have gotten bacterial pinkeye TWICE in the last three years! The first time the cause was obvious- a coworker had children with the infection, and I managed to catch it from her despite my best efforts at handwashing and avoidance.

This time? I don’t even know what happened. I wasn’t doing things considered bacterially risky such as hanging out with petri dishes small children or rubbing my eyes excessively. Probably I just touched the wrong grocery cart or doorknob and then had an itch, and my body has been pretty susceptible to infection lately due to a convergence of allergens. Now, it is totally possible to have non-bacterial conjuctivitis, however given the onset and symptoms, I felt pretty sure it was bacterial.

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